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Buying time at a heavy price

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The summer storm had been brewing for hours. From his hospital bed, R.J. Voigt looked out the tall window and watched the lightning streak across the gray sky.

"One Mississippi, two Mississippi," the 12-year-old counted, waiting for the thunder he knew would come. The loud, rattling storm would be there soon, but for now, it was four beats away.

In that corner room at the Johns Hopkins Children's Center, a junior microscope and comic books were kept near the oxygen equipment. In the closet, medical supplies and R.J.'s fudge stripe cookies were stacked side by side. The plastic line that fed R.J. pain medicine wound through the arms of a stuffed animal.

R.J. and his mother were in a seesaw world. But as much as their lives were different from before, in some ways they had managed to make them the same. The air conditioning was running cold, the way he and his mother liked it. R.J. was in his Spiderman sheets, fiddling with a video game. Michele Voigt was buzzing around the room and dusting, humming to Motown music.

Before R.J. got cancer, his mother couldn't even stand to see a splinter pulled from one of her children's fingers, and R.J. hated needles. But like so many other families, when confronted by an aggressive disease, they found themselves going down a road with few exits.

At crucial points, they had to choose between death or another treatment. R.J. didn't want anything that would hurt him, and his mother didn't want him to suffer. But when it came time to make the choices, they wound up saying the same thing so many others do: yes.

For three years, at three hospitals, doctors had given him more than a dozen cycles of chemotherapy, blasted his nasopharyngeal cancer with radiation, and cut out tumors from his head and neck. That push gave R.J. about one more year of life.

"He's had a lot of treatments. He's been through hell," Michele said. "But he's also had a lot of good times."

Tough trade-offs like this have become common at children's hospitals across the country. Roughly half a million kids have complex life-limiting conditions. In earlier years, many would have already died, but aggressive treatment has extended their lives.

Physicians, ethicists and researchers are starting to look at what this time means for the children and their parents. People are also acknowledging the emotional drain on the caregivers.

HIGHS AND LOWS

In that extra year, R.J. and his mother were far from their home on the Eastern Shore, living in the hospital or the Ronald McDonald House, where they stayed when he wasn't an inpatient. Over the months, R.J. was able to enjoy some of the things he loved. During the heavy snowstorm in February 2003, he clambered through the drifts to make a snow angel.

R.J. put on his first roller skates, and, at a festival at Camden Yards, he played darts and the bean bag toss. On that day, his aim was good. He collected a slew of prizes.

But he had been thinking about his death, and it became apparent the night his mother and doctor told him that the cancer had spread to his lungs. In late May, R.J.'s pediatric oncologist, Dr. Meghan A. Higman, looked at Michele and said flat out, "He deserves to know the truth."

Together, they walked to R.J.'s bed. His mother began. "They don't think the chemo is working."

R.J. cut her off. "It isn't," he said, matter-of-factly. "I don't want it anymore. I'm done."

"You know if we do nothing," his mother responded, "you're going to die."

The boy blurted out that he wasn't scared. He told them he was going to heaven. He asked to be buried next to his Great-uncle Wayne.

Then to the surprise of Michele and Dr. Higman, he began to write down other things he wanted. No more oral chemotherapy, nothing that would cause him bad stomach upset or diarrhea, and nothing that would hurt his heart, a side effect of some of his medicines. He cried a little.

Later that night, R.J. and his mother went to the hospital's playroom, where he challenged her to a game of Truth or Dare. R.J. dared her to pour Pepsi over her head.

Michele, 36, was a prankster herself, and she figured it would make him smile. So she dumped the 16-ounce bottle over her head. Then she dared him to wash his face in his orange Jell-O. As he did that, he was laughing.

IN THE GRASS

For several months, Dr. Higman had been trying to help Michele come to see what R.J. had already grasped.

Dr. Higman, 39, earned her medical degree after getting a doctorate in molecular biochemistry. She was at ease in the lab and with the patients. She spoke as practically as she dressed, her T-shirts tucked into jeans, finished off with fresh white sneakers. When she had something tough to discuss with Michele, she'd come by R.J.'s room and say, "Come walk with me."

They'd push out the doors of the unit and thread their way into the sunlight, on the grass, under the trees. It reminded Michele of home in Pocomoke City.

Since taking R.J.'s case in April 2002, Dr. Higman had always made it plain to her that R.J. was not likely to survive. But he was not going to die immediately.

"We're going to help R.J. live until he dies," she said. "Not just a good death, but a good life."

Dr. Higman had seen the time as a gift for many families. R.J.'s father had dropped out of their lives years ago. But staff members could get his sister Kimberly and his grandmother up from the Eastern Shore. They could celebrate his favorite holidays. They could try to keep him out of pain.

On June 9, 2003, R.J. was admitted for his 11th stay at Hopkins in just over a year. It would be his last. Because he could not be cured, Dr. Higman had used various chemotherapies to improve his quality of life. This strategy is considered palliative, or comfort, treatment. It succeeded for a time in shrinking R.J.'s tumors, which kept getting so big that it was tough for him to breathe and eat.

Michele and Dr. Higman had settled on several measures in keeping with palliative care. R.J. already had a breathing tube, but Michele did not plan to allow a feeding tube, if it came to that. She was also among the few parents who sign a do-not-resuscitate order. Each choice was ultimately hers to make.

That's a big burden for parents, and one of the reasons Dr. Higman said she sets up regular times to talk through options and consequences. "This is one of the only times in American medicine where we tell parents what to do with their sick kids," she said, "and then when it's time to let go, they have to decide."

END-OF-LIFE ETHICS

Around the country, physicians handle end-of-life care for children vastly differently. There is no agreed-upon model, and efforts to create one are at an early stage. Many doctors and nurses agree: Their capacity to treat has outstripped the discussion of whether they should.

But there is little science to guide these decisions, and a lifetime to regret them. It is easy to do too little, or too much.

Parents increasingly make these calls because the old style of paternalism in medicine has faded. And in illnesses that kill children, there is much less research than in conditions that kill adults. That means there may be no clear-cut way to proceed with a child after standard therapies fail.

Doctors say that, when asked in the abstract about treatment options, most people quickly reject aggressive, painful procedures. Yet those same people find themselves accepting high-risk treatments, sometimes for themselves, more often for their children, to avoid dying.

"If they can get it, they want another day being alive," said Dr. William Gray, a surgeon at the University of Maryland Medical Center, one of the doctors who cared for R.J.

Some worry that too much authority, and burden, has been passed to the families. Legally, for any child under 18 the parents have the decision-making power. When there are disputes, the cases can wind up in hospital ethics committees, or rarely, the courts.

More and more, doctors are trying to find out what the child wants, especially given that child development research shows that critically ill children are mature beyond their years. Some scientists say that, if the information is presented in an age-appropriate way, children as young as 7 can take part in treatment decisions.

Often the child's voice is subdued. Many children are so bonded to their parents that they are essentially a unit. They withhold things to keep from upsetting parents. Some try medicines they may not want.

Others are unsure of their feelings or won't express them. Kids sometimes won't say they're in pain, experts have found, to avoid a needle stick or a return to the hospital.

Children often stay silent, too, on their own mortality.

That has been the experience of Dr. Ken Cohen, a pediatric oncologist at Hopkins who cares only for children with brain tumors. "The kid says, 'I know I'm dying, but I'm not supposed to say anything.'"

When children don't express their thoughts directly, there are ways to get at their feelings. "The children say a lot without saying things," said Barbara M. Sourkes, a psychologist at Lucile Packard Children's Hospital in Palo Alto, Calif..

Children may hint about their own prospects, according to the national Institute of Medicine's landmark 2002 report, When Children Die. Asked what he was going to be when he grew up, one sick child responded, "A ghost." Another boy, discovered by his mother lying stiffly on his back, explained he was practicing for his coffin.

"How taboo is this, and how lonely for parents and kids. It's our culture, and nobody should be faulted for it," said Dr. Joanne Hilden, a pediatric oncologist at the Cleveland Clinic and an advocate of improving end-of-life care for children. "But silence is way, way too intolerable."

ASKING R.J.

Everyone worried about what R.J. really wanted. Dr. Higman had told him from the outset that at any point, he could stop the treatments that were buying him time. But she worried that he was doing what many young patients do, agreeing to certain things to go along with his mother.

Early on, R.J. was encouraged to make a little book to express his feelings about his cancer. He wrote that he was most afraid of "pain and misery." Of how his life had changed, he wrote, "I can't run fast anymore. I can't eat as much, and I'm not as strong."

Only in rare moments was he candid about how rough things were. In July 2002, right after he'd had surgery to insert a breathing tube, his grandmother, Carol Wisnom, watched him scrawl her a note.

"Grandmom, I can't go on like this," he wrote. "I just want it to be over."

Wisnom said she wanted to squeeze him so hard that she'd take the cancer right out of him. She felt as helpless as everyone else. She said she leaned over him, gave him a gentle hug and said the only thing she could think of. "Be strong."

As time went on, communicating with R.J. became increasingly difficult because of the effects of his tracheotomy, treatments and growing tumors. His speech was a raspy whisper.

When the hospital got him a laptop computer customized with his most frequent statements -- "I want my Yu-Gi-Oh cards" or "I want my Mom" -- his first flurry of keystrokes surprised the speech therapist.

The words on the screen piled on each other, the computer's artificial voice making pronouncements: "Sick and hungry and thirsty and hurt."

The therapist thought he was just testing the keys. "Are you all those things now?" she asked.

He nodded yes.

BIRTH OF A MOVEMENT

Well before R.J. Voigt became a patient at Hopkins, concerns about the experiences of young patients at the end of life had troubled staff members. Doctors and nurses had to go about their work with little time to talk about or digest the anguish before them. That changed in 1997, after several of their long-term pediatric patients died.

Nurses were angry that they'd had to do painful procedures they didn't feel helped much. Doctors weighed whether the deaths could have been more peaceful.

Dr. George Dover, director of the children's center, put together a committee to look at how children died at Hopkins. They found parents who hadn't been clearly told that a child might not survive. They found that conversations about care happened too late, or not at all. They found children enduring too much treatment and pain.

Cynda Hylton Rushton, a nursing professor, co-chaired the committee with pediatrician Nancy Hutton, who mainly treats children with HIV.

"We wouldn't do some of this to adults," said Rushton, speaking of aggressive care at Hopkins and other children's hospitals. "We get so focused on the treatments that we forget to look at 'Are we really making this child's life better?'"

Dozens of staff members began to meet, putting together their version of palliative care. The goal is to provide physical and emotional comfort to the patient and support to families. And whether or not the child dies, the staff tries to maintain hope, if not for recovery, then for quality time and a good death.

"There's the healing part of what we do, which is sometimes distinctive from curative attempts," said Dr. Hutton. "Helping them to have comfort, psychic peace, to feel loved, not to feel deserted."

In 2000, they named their effort the Harriet Lane Compassionate Care Program, after the bereaved mother who endowed the children's hospital in 1906, in memory of her twin sons who died of rheumatic fever.

"People say, 'It's not time to talk about it yet,'" Rushton said. "We're saying, 'When would the right time be?'"

In other hospitals around the country, doctors and nurses were asking the same questions, and at the core, trying to answer the hardest one: How does a dying child best live?

Among the questions is how to best control pain. In a February 2000 study, Dr. Joanne Wolfe of the Dana-Farber Cancer Institute interviewed parents whose children had died of cancer, finding that 89 percent were described as suffering substantially from at least one symptom in the last month of life. Half had three or more symptoms, such as pain, nausea and fatigue.

Physicians believe some of this is avoidable, and they know from other research that dying patients of all ages live longer if they suffer less. They are able to sleep, eat and relax better if their pain is treated.

At Hopkins, the palliative care team has begun to work with the units that have the most deaths, including pediatric oncology -- the eighth floor.

THE WATERING HOLE

On that long hallway, at night, when the sick children couldn't sleep, the mothers would tuck them in strollers and push them, up and down, slow and silent. Others would meet outside their children's doors, or in the lounge, to catch bits of information.

The women know each other only through their children's first names. They try to track how the others are doing, seeing victories or setbacks as a foreshadowing of what might happen to their kids.

They call themselves "onc moms," short for oncology. They wear sweats and slippers, their hair is jammed in ponytails, cell phones are shoved in their pockets. The unit becomes their neighborhood. They sleep in pull-out chairs by their children's beds and do their laundry down the hall. They deck out hospital rooms, setting up sprawling pink canopies, ocean-themed comforter sets, 5-foot-tall inflatable palm trees.

In Room 817, Michele had countered every piece of medical equipment with something to make it look like a boy's room.

The mothers have been forced to become medical experts overnight. On the floor, far fewer fathers -- many of them holding down jobs -- than mothers were spending long hours tending their children. Michele, who had dropped out of high school, had figured out the computer and learned the lingo of cancer. She had become a pro at medical procedures that nauseated her at first, like suctioning her son's tracheotomy tube.

She had watched how other parents got what they needed in the hospital and followed their examples. She had nicknamed the physicians by their level of training, and how much she could sway them. The newly minted, naive residents were "jellyfish," the more experienced fellows "Play-Doh," and the attendings, the most veteran doctors, "clay."

"I could be kind of pushy where R.J. was concerned," she said. "I am not a doctor. I am not a nurse. But I am R.J.'s mother. And I learned that nobody knew R.J. like I did."

In the hall, her white terrycloth slippers slapping against the tile, Michele would pass a bulletin board with the bright smiles of seven pregnant nurses. "Babies booming on 8-East," a sign announced. Perhaps because of the new offspring, but likely because of the emotional toll, half of that staff would be gone in the next year.

One night after midnight, Michele walked down the hall to the family lounge she called the "watering hole."

"They have nothing else for him. R.J. is dying," Michele said to another mother in a matter-of-fact, tired voice, as she scrambled two eggs. It was a rare moment of acceptance. "I wouldn't wish this on anybody. I feel like I'm 60 years old."

The other woman, whose 1-year-old son was being treated for leukemia, was slumped over a chair, absent-mindedly eating popcorn. She couldn't know then that in the coming months, 30 children she would know from this 22-bed unit would die, and that eventually her son would be among them.

"I used to think I wanted another child," Marnice Sigur said wearily, "but nope, I'm through."

Perpetually vigilant, these mothers became sensitive to any change of rhythm. A strange quiet or the late-night presence of an attending physician might mean that someone's child was nearing death. Three times in the last few weeks, the alarm had gone off signaling that a child was in trouble.

On this night, the high-pitched buzz went off again. Sigur saw the accompanying blue light outside her son's room. "That's Bryce!" she shouted, taking off down the hall.

Michele watched the woman run. "Oh my God," she said.

Sometimes, when R.J. was having a bad day, she would see a child doing well, and realize that she felt envy. Tonight, even as she felt sad, another part of her was thankful that this time, it wasn't R.J. She hated that. She knew she could be the next one running down the hall.

TIPPING POINT

By early July 2003, even though he'd had some good months, R.J. was struggling. But he kept attempting to communicate, to endure his pain, to do things he liked. And to do things for himself.

The few times he got out of bed, he would twist his body around, pushing his head off the pillow to get upright. At the least move to assist him, he would growl, "I don't want any help!"

"Ronald Joseph Frank Voigt, I was not helping you," his mother would reply. "You don't need to tell Mommy. I am aware that you don't want help."

Yet he was willing to rely on her for some things, using their signals. R.J. tapped on his wrist to find out if it was time for his cartoons. He made circles around his eyes when he wanted to read using his gold-rimmed glasses, his "Harry Potters." When he wanted to watch a movie, he got her to pop the tape into the machine.

He stayed in command of the remote. And his independent outlook came through while watching James and the Giant Peach. In the video, an orphaned boy must live with his two mean aunts on a desolate, scary hill, with no playmates. "If I lived there," R.J. said, "I'd run away."

When R.J. hurt, he tapped the top of his lip to tell his mother he was in pain. Sometimes, it was so bad that he was curled up on his side. His pale face was hard with tumors and swollen with fluids, because so many lymph nodes had been removed. His neck was sore and scarred. The breathing tube was cutting into his chin.

Michele constantly passed her son hot packs for his head, cold packs for his jaw. When the pain kept escalating, Dr. Higman called in a team that specialized in controlling it. Michele found herself resisting increases in morphine. She blamed the medicine for the way her son sometimes lay awkwardly in his bed, too woozy to even watch television. To consent to the next step, a pump that allowed the patient to trigger doses, meant acknowledging that he was dying.

But one night, after the nurses had left and R.J. asked her to make the pain go away, she saw she was wrong. The next morning, he got the pump.

THE SERENITY PRAYER

To minimize needle sticks, R.J. had an implanted access disc, called a port. He had once eagerly pulled up his shirt to show off the needle in his chest. But over time, he'd come to hate the routine replacing of that needle. He came up with any excuse he could to avoid it.

On one day, after R.J. said he wanted to watch a cartoon and had to eat something first, it was time. His mother and nurse didn't have the heart for it. But they'd already put it off for a week and a half, and further delay risked infection.

Finally, his mother sighed and looked at R.J. with a grim determination. "We've got to change your port," she said. She turned off the television and flipped on the overhead lights. The nurse snapped on her bright purple gloves.

R.J.'s eyes went wide with fear. He shut them tight and put his hands together to pray. After a long moment, he gave the thumbs-up that he was ready, and reached out to his mother.

She grasped his skinny fingers in her own. The nurse, Dina Chopek, began to pull off the square bandage. "He's always had such sensitive skin," murmured Michele. "Since he was a baby, he couldn't even stand a Band-Aid."

In a delicate process that would take 15 minutes, Chopek alternately tugged and swabbed, revealing the raw skin underneath. Watching, his mother sank to her knees.

Just as Chopek was ready to pull the old needle from his chest, Michele began to recite "The Serenity Prayer." It had become their own kind of rosary.

"God grant me the serenity to accept the things I cannot change; the courage to change the things I can," she said, trying to time the words to the nurse's work. And as R.J.'s hands closed into fists and Chopek pushed in the fresh needle, Michele finished, "and the wisdom to know the difference."

Michele could see the toll on her son. R.J. had lost half his hearing because of a cancer treatment, and they were worried about his eyes. The boy still hoped he might recover and go on to become a doctor, but not if he lost his sight.

"Everything I do to help him," his mother said, "hurts him."

The doctors have concluded that there are no right or wrong choices. One person's futile care is another's best chance. But many caregivers have internal conflicts.

Dr. Higman worried about whether she was doing what R.J. really wanted. Nurses sometimes felt torn. For instance, they often gave him a stimulant, Ritalin, to counteract the drowsiness caused by morphine. That way he would be alert enough to read or watch television, or talk to his mother. One nurse wondered if that made it harder for R.J. to relax, to let go.

TAP ON THE DOOR

For weeks, a soft-spoken woman had been stopping by Room 817, but Michele didn't even want to look at her.

Elizabeth Reder had no white coat, no stethoscope, only the clipboard she hugged to her chest and the list of children, the sickest children. R.J.'s name was on the list.

Her face was gentle, her blue eyes kind. Her official title was bereavement coordinator. Her job was to support and comfort staff and families coping with young patients who might die. That made her at once the most calming and threatening person in the hospital.

It was one thing to have frank talks with your child's pediatrician. It was another to talk to Reder.

"She's the mascot for giving up," Michele said.

She couldn't acknowledge that the time had come when her family needed Reder. In other ways, Michele could not ignore changing circumstances. She'd agreed with Dr. Higman to pare back R.J.'s care to fluids, antibiotics and pain medicines.

She hated that R.J. had stopped his chemotherapy. She hated having been told that medical markers no longer mattered. For three years, Michele had been drilled to stay on top of his symptoms, his temperature, his oxygen level.

R.J. let it be known he was irritated by the oxygen monitor on his finger. As sick as he was, he held it up every time Dr. Higman walked in. She let him stop wearing it during the daytime.

"Is it bothering him, or is it bothering you?" Dr. Higman asked Michele, when she objected. "At this point, he gets to decide."

THE ANGELS ARE COMING

R.J.'s condition kept deteriorating. During the third week in July, Michele had been attempting to hang a banner signed by friends in Pocomoke when Reder reappeared.

"Looks like you're having a rough day," she said. She walked slowly around the bed, prepared to retreat. Michele slumped into a chair, clutching a stuffed animal R.J. had bought her in the gift shop downstairs. She was looking at her son.

His eyes looked like two brown bruises. His chapped lips were bleeding from frequent suctioning of his mouth. His legs, like skinny white statues, rested on pillows, trembling under the pale blue sheets.

"They wanted to know if I wanted to put him in a diaper. I can't have him die like that," she confided. Then she broke down, upset that for the first time, she had let the nurses clean him.

"You're a mom. You know all the mom things, but you can't know all the nursing things," Reder said, moving in. She knelt down and laid her hand on Michele's arm.

"You're always going to be the mom."

Later that day, in his own way, R.J. confirmed what Reder had said. While Michele was outside meeting with doctors, he gestured to nurses and scrawled a note: "I need Her."

Michele rushed into the room, ready to perform some task. Then it dawned on her. "Do you just want me to be here?" she asked.

R.J. looked at her. He reached up, and ever so gently, cupped her cheek in his hand.

That weekend, a little after 2 a.m. on Saturday, July 19, R.J. stirred in his bed. He had been dozing, his eyelids swollen, his thick, dark eyelashes matted, hugging his favorite stuffed animal, the rabbit Mr. Browney.

R.J.'s long, skinny finger pointed at the end of the bed. He called out, "They're coming!"

"Who's coming?" his mother asked, alarmed, jumping up. "Who's coming, R.J.? A man? A bug?"

In the chilly, dimly lit room, as the oxygen hissed and the suction tube bubbled, his mother strained to make out his words. He tried to answer, once, twice, and then again as she bent close, putting her ear near his face.

Determined, R.J. took a big breath and managed to spit out the words. His voice was hoarse and corroded, like an old man's. "The angels. The angels are coming."


About the series

In preparing these articles, The Sun relied on medical records, R.J.'s personal journals and interviews with family, friends, physicians, teachers and others.

The Sun received permission from R.J., his mother, Michele Voigt, and the Johns Hopkins Children's Center to be present during the last four weeks of R.J.'s life, except, at his mother's request, his death.

Most of the events described in this series were witnessed by the reporter and photographer. In addition, 15 families who have lost children, as well as more than 70 health care professionals, were interviewed.

> Part 1: Never Give Up
> Part 2: The Angels are Coming
> Part 3: Final Choices
> Part 4: Aftershocks
> More photos and videos from the series

Copyright © 2014, The Baltimore Sun
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