Years on Dialysis Brought Joe Mole To a Crossroads
Treatment Kept Him Alive, But Always Exhausted; A Sister's Plea to Continue Handmade Clocks for Nurses
MICHAEL J. MCCARTHY / Wall Street Journal 3nov2005
ELKINS, W.Va. As the winter of 2002 approached, the only things standing between Joe Mole and the biggest decision of his life were his family and friends, his faith, and an unfinished set of cherry wood pews. Mr. Mole, a 41-year-old carpenter, was debating whether to die.
He had spent most of his life dealing with complications of diabetes, diagnosed when he was 19. By the prime of his life, his vision was blurring, he had lost four toes to amputation, and kidney failure had forced him to undergo dialysis treatments three times a week.
None of this was life-threatening. Mr. Mole wasn't suicidal. He was close to his two sisters. He liked going to church and cooking neighbors his special chicken roll-ups. He was proud of his reputation for making fine cabinets, candle holders, clocks and other wood items.
source: US Renal Data System
But every Monday, Wednesday and Friday, he drove his Chevy truck to a clinic, climbed into reclining chair number 7, and had to sit for four hours as a dialysis machine washed toxins from his blood that his kidneys no longer could. And he was sick of it sick enough to start telling people he might quit the treatments even though that meant certain death.
Dialysis is one of the great life-extending treatments of all time. Despite failed kidneys that can kill a person in a matter of days, life can be preserved for a decade or more. Yet among those with kidney failure who have died, roughly one in five chose to quit dialysis, according to government data. Forgoing dialysis means nature takes its course, poisoning the body to death, often within a week or so.
Between 1995 and 1999, about 36,000 people died this way, government statistics show. Between 2001 and 2002, the latest data available, an additional 25,000 had died; the mean age of those who chose to quit dialysis was 74. The number is likely to keep growing because more people are receiving dialysis.
Fueled largely by an increase in diabetes, the number of Americans on dialysis machines doubled between 1988 and 2003, to nearly 325,000. About 100,000 people start the treatment each year.
People who choose death usually cite the discomfort and tedium of treatments, nausea, vomiting, exhaustion and troubles with veins. They usually have chronic, but not terminal, health woes, such as diabetes, high-blood pressure and heart problems.
Otherwise, voluntary dialysis quitters are often in solid mental health, and aren't usually influenced by major depression or suicidal tendencies, according to psychiatrists who have studied the issue. They don't leave family members to confront a sudden loss with little more than a suicide note. Rather, they sometimes quit treatments despite having family and friends who plead with them to choose life.
A Difficult Autumn
One day in November 1999, Joe Mole settled for the first time into the gray reclining chair at the dialysis center in Elkins, a town of 7,000 amid lush mountain forests. Working beneath fluorescent lamps, a nurse fit two clear tubes into Mr. Mole's arm. One tube turned red as his blood was extracted and siphoned into a filtering machine called a dialyzer. The other reddened as it returned the cleaned blood to Mr. Mole's body.
He'd had a difficult autumn. In September, his doctor, Rebecca Schmidt, told him that, due to his diabetes, his kidneys had failed and he would have to begin dialysis. Then his mother became ill with lung cancer. Dorothy Mole, 72, died that November. As her adult children stood around her bed at home, she took a last gasp. Joe Mole darted from the room and threw up.
Joe had been born three months premature. Doctors told Mrs. Mole her son wouldn't last long, his family recalls. But he grew into a slight, shy child, who liked to ride his unicycle along the Tygart Valley River, laughing off the taunts of passersby: "Hey, you lost a wheel."
A year after graduating from high school, he was diagnosed with Type 1 diabetes, then known as juvenile diabetes. Doctors discovered the disease after Mr. Mole lost 30 pounds in a matter of weeks, leaving him at 5-foot-7-inches, 130 pounds. Insulin kept the diabetes under control as he lived with his mother and father, Donald W. Mole, who taught him his woodworking trade.
Eventually, Joe Mole set up his own business. He made enough money to buy a small apartment building, which he owned for rental income, but chose to stay with his parents.
Mr. Mole started his dialysis treatments at the age of 38. Many patients start in their early 60s. While mortality is high because these patients often have other serious ailments, some patients can last 10 years or more. The annual cost for the average dialysis patient is about $64,000. In 1972, Congress passed legislation that made people of any age with permanent kidney failure automatically eligible for Medicare, which picked up most of Mr. Mole's tab.
Initially, he found it hard to rise at 5 a.m. and drive through mountain fog to make the early dialysis session, but it allowed him to get to work by late morning. His legs cramped up from sitting in one place so long. He told his eldest sister, Pam Kimble, that he sometimes pretended to be asleep so he didn't have to talk to the other patients. "I don't like talking to these old women," she recalls him saying.
Many days sitting next to him in chair number 6 was fellow diabetic Genny Cross, 64. A previous companion had commandeered the TV remote, forcing her to watch the History Channel. "Joe let me watch whatever I wanted," she says.
Before His Baptism
Mr. Mole had never been religious. But around the time of his mother's death and his first dialysis treatments, he attended mass at St. Brendan church with his sister Beverly Wingate, 10 years older and visiting from Cincinnati. That afternoon, he started taking instruction to become a Roman Catholic.
Shortly before his April 2000 baptism, he had four toes amputated. As happens with many diabetics, the circulation in his feet had grown weak and his toes had become hopelessly infected. Mr. Mole was concerned he wouldn't be able to stand in the baptismal font, as adult converts did, because doctors warned him not to get his feet wet. "I have to get in that water," he told his sister. "Otherwise, I'm worried it won't count."
Before the service, he taped a plastic bag around each foot. "Joe had bags on his feet in the baptismal font," says Father William Anderson, who baptized him. "And he was beaming."
That summer, Mr. Mole vacationed in Florida with Ms. Kimble, a nurse, and her boyfriend, Junior Phillips, a truck driver. They rode in a power boat and watched the sun set over the Gulf of Mexico. Mr. Phillips held Mr. Mole in the water as he tried to learn to swim. His sister drove him every other day to a dialysis center, where he sat for the procedure, then returned to the beach. Sometimes he was too tired for anything fun, she says.
One day they visited Cypress Gardens, a tourist spot. Inside a butterfly sanctuary, Mr. Phillips recalls spotting Mr. Mole covered with butterflies. Only one or two landed on him and Ms. Kimble. "Pam," Mr. Phillips said, "do you think they somehow know he's sick?"
In January 2002, the Tomblyn Funeral Home in Elkins commissioned Mr. Mole to build and install 22 cherry wood pews in its chapel. It was one of the biggest projects he'd ever undertaken. He asked for about $1,400 for the job, which he figured would take three months.
He was 40, but his health was declining. In addition to failed kidneys, he had high blood pressure. The diabetes, as it frequently does, harmed the blood vessels in his eyes and blurred his vision. He developed a chronic raspy cough.
When Ms. Kimble followed him in converting to Catholicism, she asked Mr. Mole to sponsor her. He worried that he'd embarrass her if he coughed through her baptism. He put some ice chips in a plastic bag and sucked on them throughout the sacrament. It worked. "I could hear that baggie rattling behind me throughout the service," Ms. Kimble recalls.
That summer, Mr. Mole spent hours one hot day working on a roof. Removing his jeans later, he discovered he'd seriously burned the leg he'd sat on while on the roof. Because of his poor circulation, he hadn't felt his skin burning. Ms. Kimble, who lived nearby, applied ointments and bandages for weeks before it healed.
Fall of 2002 found Mr. Mole struggling with the pew project. It had grown more complicated than he'd expected. Because the chapel floor was old and uneven, Mr. Mole had to custom-cut the bottom of some pews. He worked late nights and weekends. Sometimes he was too tired for the day's final chore, using an air hose to blow sawdust from the hair on his arms.
The funeral-home owner, Myron Tomblyn, occasionally suggested Mr. Mole knock off early. "He said he felt better working with wood than sitting home on the couch," Mr. Tomblyn recalls.
Ms. Kimble worried that her brother seemed weaker. Sometimes she'd pop into his shop to sweep up sawdust or hand him tools, and take the opportunity to check his blood sugar. "I'm getting sick, Pam," she recalls him saying. "I've got to finish these pews." Ms. Kimble's boyfriend, Mr. Phillips, quietly began lining up a replacement to finish the job if Mr. Mole couldn't.
But just before Thanksgiving, Mr. Mole, with the help of Mr. Phillips and a few other friends, put the last of the pews in place. It was seven months later than scheduled. An appreciative Mr. Tomblyn, feeling Mr. Mole had underbid the job, paid him a bonus of more than $600.
Around Christmas, Mr. Mole showed up at the dialysis center bearing gifts: more than a dozen mantel clocks that he had made, for each of the aides, nurses and doctors. He handed one to nurse Barbara Weaner without a box or wrapping, "just a hug and a thanks," she says.
By then, he had begun talking privately with her about the possibility of stopping his treatments. She wasn't surprised, she says; other patients had asked her about quitting before. He told her he didn't feel well enough to work many days, and she knew how important his work was to him. "It would come in waves," she recalls. "He would talk about it for about a week, keep showing up for treatments, and then not talk about it again for a month or so."
'I Can't Take It'
One night in January 2003, Mr. Mole lay on his bed with his sister, Ms. Kimble, at his bedside. "I can't take it any more," she says he told her. "I'm just too sick. I want to go be with mom."
He'd hinted at his intentions before, but never so forcefully. "You've got to keep going," Ms. Kimble said. "You've got to try." He said nothing. "You're not sick enough," she continued. "The big guy's not ready for you."
She recalls his answer: "If you were in my body, you wouldn't say that."
Frantic, she made Mr. Mole call her boyfriend, who was driving his truck near Detroit. Mr. Mole reached him on his cellphone and told him what he wanted to do.
"I got to pull over, Joe," Mr. Phillips replied. "Because my eyes are all watery."
Joe Mole, making pews in his carpentry shop, in the summer of 2002.
Sitting in the dark along Interstate 75, Mr. Phillips says he told Mr. Mole how much he'd be missed by those who loved him. "Joe, please," he said. "You can't do this." Mr. Mole hung up, and didn't say a word to his sister.
In the weeks to follow, Mr. Mole kept bringing the issue up with his sister. Each time, Ms. Kimble gently discouraged: "Why don't you go just one more time?" She was hoping to keep him alive until a kidney donor could be found. He was on a waiting list, hoping to find a suitable transplant. Ms. Kimble offered to donate one of her kidneys, but Mr. Mole declined, worried she might need it.
Sitting in Ohio, his other sister, Mrs. Wingate, heard Mr. Mole's despair over the phone. "He would call me crying, saying, 'I can't take it anymore,' " she recalls. "He wanted to quit, but he didn't have the guts to." She wanted to stop his suffering, but couldn't bring herself to tell him to stop the treatments. She told him to pray, and to speak again with his nurses and doctor. "I knew it had to be his decision."
The sisters say they felt their brother wasn't close enough to their dad to discuss the matter. So Ms. Kimble took their father aside and apprised him of what Joe had in mind. "If Joe stops," she told her father, "he'll die." Her father, characteristically stoic, said nothing, she recalls. (Mr. Mole's father declined to be interviewed.)
Mrs. Wingate says that one morning shortly afterward, Joe Mole lay in bed and told his father he didn't feel up to going to dialysis. She says their father told him: "You've got to go I won't let you quit." The elder Mr. Mole drove him to the dialysis center.
Dr. Schmidt encouraged Mr. Mole to hang on until a kidney transplant came through. He'd been on a waiting list for three years, and twice had been called about possible matches. But both times, the kidneys went to other candidates, who were deemed more appropriate. Dr. Schmidt, 50, had never had a patient so young consider ending dialysis. Her own husband, who had had kidney failure, made a complete recovery with a transplant.
Mr. Mole kept going to dialysis. Many days he was too weary to leave the house. His cough and eyesight worsened. He began using a magnifying glass to see the tiny numbers on his insulin syringe as he dosed out 22 units in the morning, 25 in the evening.
Itching frequently besets dialysis patients, as toxins surface on the skin. Mr. Mole scratched himself bloody. Ms. Kimble bought him a pair of white cotton gloves so he wouldn't hurt himself.
Nurses from a hospice-care agency came to treat him at home. One was Timothy Nulph, 43, who drove a Harley Davidson motorcycle and wore shoulder-length blond hair, a mustache and a beard. He and Mr. Mole talked about woodworking, women and how they'd ride motorcycles together when Mr. Mole felt better.
Mr. Nulph says Mr. Mole asked him what he could expect if he quit dialysis: How long would he live? What pain and discomfort might he experience? How was quitting dialysis morally different than ending your life, as Mr. Mole put it, "with a shotgun"?
Mr. Nulph says he listened without advising. But he couldn't help giving his opinion when Mr. Mole asked whether quitting dialysis was a sin.
"You're being kept alive by a machine," Mr. Nulph says he told him. "Yes, God gave us the knowledge to make the machine, but I can't see stopping something artificial as a sin."
Ms. Kimble asked Father Anderson to talk with Mr. Mole. The priest visited Mr. Mole in his room one day in June of 2003. Father Anderson told Mr. Mole that what he was contemplating wasn't suicide. Rather, it was a decision not to interfere with nature taking its course. The church didn't require him to submit to "extraordinary" means, such as a kidney machine, to sustain life, the priest said. Mr. Mole looked relieved, Father Anderson recalls.
How the church views the decision to discontinue medical treatment varies upon on the individual case, says William Ryan, a spokesman for the U.S. Conference of Catholic Bishops. "If the person simply wanted to stop dialysis to end their life that wouldn't be considered the moral thing to do," he says. "If the treatment is considered burdensome, not doing any good, useless, it may be permissible to quit in the eyes of the Catholic faith."
Late the night before the Fourth of July, the phone rang at Mr. Mole's home. The Charleston Area Medical Center had a potential donor kidney. Mr. Mole was told to keep his dialysis appointment the next day in case the kidney wasn't suitable. Mr. Mole called Ms. Kimble, who recalls that he sounded excited. She agreed to drive him to Charleston if the kidney worked. He packed a bag.
The next day, as he sat in seat number 7 at the dialysis clinic, word came from Charleston: The kidney wasn't going to work for him. Mr. Mole called his sister. "Not a match," he said.
An Empty Chair
That Monday, Genny Cross arrived at the dialysis clinic to find chair number 7 empty. "I thought maybe he was in the hospital," she recalls.
Mr. Mole was at home, where Father Anderson had come to give him communion. Because he was so nauseated, Mr. Mole was concerned he might regurgitate the host, so the priest broke off a speck and gave that to him. "In God's eyes," the priest said, "you're in good shape."
Ms. Kimble began calling family members, summoning their brother, the cousin they vacationed with in Florida, an aunt and uncle from New York state. She told them Mr. Mole was in dire shape, leaving it to him to elaborate on what he had decided. On Tuesday, when Mr. Mole flatly told his aunt, Jeanne Ice, that he had quit going to dialysis for good, she sat stunned at his bed, holding his hand. "I wanted so much to talk to him and say don't do this, but he was so adamant, I didn't think it would help," she recalls.
Some patients can reverse course after missing a dialysis treatment or two, but at a certain point there's no turning back. One day he asked Mr. Nulph, the hospice nurse, what would happen after he missed his third session. "You're going to die, Joe," Mr. Nulph said. "We talked about this."
He says Mr. Mole replied, "Yeah, we talked about this."
After missing that third session on Friday, July 11, 2003, Mr. Mole spent part of the day retching into a trash can that his Aunt Jeanne held for him. Mr. Phillips says Mr. Mole told him, "I need you to take care of Pam." Mr. Phillips bent down and kissed Mr. Mole on the side of the head.
Around 9 that night, Joe Mole tried to move in his bed, and Ms. Kimble, standing watch, grabbed him by the arms. They felt rigid, clammy. "Dad," she called to her father, who was in his own room, "you better come quick." She says their father hurried into his son's room, and began shaking him.
"It's no good, Dad," Ms. Kimble said.
A Riderless Harley
At the Tomblyn Funeral home, family and friends of Robert Joseph Mole, 42, sat on the pews he'd made and bid him farewell.
Father Anderson told them Mr. Mole was handed life like a piece of imperfect wood, and through his handiwork, crafted something beautiful. He joked about a reading from the Gospel of John: "In my Father's house are many mansions." Father Anderson said, "Joe is probably up there, fixing some of them now."
A riderless Harley stood on a hill outside St. Brendan church, placed there by Mr. Nulph, the hospice nurse, as a tribute.
Two years later, his sisters say they remain haunted about how they responded to their brother's wishes.
Mrs. Wingate wonders if she should have simply encouraged him to do what he wanted. "Even now I struggle with the rightness and appropriateness" of her early response, she says. On several occasions when she has thought about her brother, she says a white butterfly with a black spot on each wing has appeared, fluttering around her before flying off. She thinks it's a signal from her brother, telling her he's well and happy.
In September, Ms. Kimble, 57, attended the dialysis clinic's annual candlelight vigil for patients who have died. She says she now regrets discouraging Mr. Mole from stopping treatments. "It was selfish on my part," she says. "I just didn't want to let him go."