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Living on, with heartbreak

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The list seemed too long for one person to read, so the small group took turns. They stood round a table in a hushed conference room that December night a year ago. The grieving parents were far from the hospital, but as the wind and rain blew outside, the people who had looked after their children called out the names.

They called out R.J. and Zane, and Heather and Samantha, and Favor. For each month, as more and more names were called, someone struck a match and lit a tea candle, until the tray of candles was glowing.

"Every day of their life was a gift to their parents and a gift to us," said Elizabeth Reder, the bereavement coordinator at the Johns Hopkins Children's Center, who remembered a hospital room filled with SpongeBob posters and comics as she talked about 12-year-old R.J. Voigt.

There were a dozen little flames, one for each month. They stood for R.J.'s death in July and for the 125 other children who died in 2003.

They were among the boys and girls who could not be saved, despite medical advances that have spared so many others. Afterward, the people who loved and treated them, who staved off death for a time, must start on another journey that can be just as devastating.

The impact on families and health care professionals, which has been little recognized, is commanding attention. Around the country, nurses, social workers, parents and physicians are pushing into a medical and ethical frontier. They want to bring compassionate care to dying children, not only to help them, but to ease the anguish of everyone left behind.

Too many sick children endure aggressive procedures and treatments. Too many won't get the pain medicine they need. Many go months and years, cycling in and out of hospitals, without emotional and other support, concluded the Institute of Medicine in its report "When Children Die." In calling for more research and better training, the institute urged organized medicine and others to look at what has been a hidden issue.

"It is a painful thing to sit and dwell upon, that there is undue suffering happening to and with our babies and children," said Lizabeth Sumner, a member of the IOM committee who pioneered hospice programs for children in San Diego. "There will always be kids who die of something. As a society, how are we going to choose to respond to that situation?"

The nurses, doctors and others who had been mostly working in scattered ways met the day after the report was published in July 2002. Energized, they formed a coalition, the National Alliance for Children with Life-Threatening Conditions. They've set up an online database with resources for families and caregivers, and they've been bombarded by requests for help. In recent months, the care of critically ill children has been the focus of national conferences and showcased in leading medical journals.

At a conference two weeks ago at the National Institutes of Health, researchers from around the world gathered to assess what they know about the end of life. They concluded that much of it is poorly defined and not understood. The panel called for research to figure out what kind of care works and what doesn't, particularly for groups such as children.

The National Institute on Nursing Research has dedicated half of an $8 million initiative on end-of-life issues to kids. Nine researchers are digging into issues as varied as life support decisions for premature babies and how to do palliative, or compassionate, care for patients of different ethnic backgrounds.

At first, few physicians expressed interest, because many were worried about how to do the research without intruding, said Dr. Patricia A. Grady, the institute's director. But she said families have urged them not to be afraid. They hope something can be learned from their ordeals.

AGAINST NATURE

For the family of R.J. Voigt, the aftershocks started right after his death on July 25, 2003. His sister, who is a year older, had seen him rebound so many times that she said she didn't grasp that he was going to die. His grandmother rued the excuses she'd made, not seeing him as often as she wanted when he was so sick. Now, she calls herself a coward in the face of his cancer. R.J.'s mother was swept with the urge to kill herself, not because she couldn't face the future, but because of what she described as a consuming wish to be with her son.

The Friday morning that R.J. died, his relatives said their goodbyes and went to find his mother. She had fled to the place that had always comforted her, the marble atrium downstairs in the hospital's old administration building, where the towering statue of Jesus stands.

Nearby, in the hallway, Michele sat numb in a chair. R.J.'s grandmother sank into one, too. "We all thought chemo and radiation and it would all be over and go back home," Carol Wisnom said, almost to herself, pulling Taylor, R.J.'s 3-year-old cousin, into her lap. "We all refused counseling. We should have taken it. It's just tore this family to pieces."

R.J.'s sister, Kimberly, stood nearby, his blanket around her shoulders, trembling, crying to her mother to come home with them. Michele Voigt had been away in Baltimore for most of three years during R.J.'s treatment. But it would be a long time before she would be able to go home to Pocomoke City.

Her grief was like no other. The natural order had been violated. She would be burying her own child. Depressed and suicidal, Michele was hospitalized within hours in Hopkins' psychiatric unit.

On the last room on the hall, she sat Indian-style on the bed, hugging a piece of the colorful sheet from her son's deathbed. She yearned for the dream that people promised her, in which R.J. would appear and tell her he was all right.

Instead, her son would come to her in nightmares, asking why she did too much, why she did too little. In another nightmare, several of R.J.'s physicians huddled in a corner, talking among themselves. "He'd be alive," they were saying, "if only his mother had ... " As she strained to hear, their voices dropped to jumbled whispers.

STAFF BURDENS

The physicians, nurses and others on the staff were carrying around wounds of their own. In a survey done by Harriet Lane Compassionate Care, the Hopkins program trying to improve the care of sick and dying children, senior physicians revealed grief and regret from cases 30 years before. Many caregivers felt burned out.

In their fast-paced jobs, even though they have the reward of saving so many lives, there is little time to mourn those who don't make it. Dr. Ken Cohen, a Hopkins pediatric oncologist, said he sometimes goes back to his office, closes the door and cries. Dr. Nancy Hutton, a pediatrician and leader of palliative care at Hopkins, said she will wait until she is alone with a patient and then whisper, "I'm sorry." The children have taught her not to be afraid of death.

Dr. Meghan A. Higman, R.J.'s doctor, sometimes sees something in a patient that makes her think, "This could be my sister's child." But the pediatric oncologist said she copes by chatting on her cell phone long distance with her sisters, by trying to make order in her office, in her garden, and by talking with colleagues about the cases that she can't shake.

And children such as R.J. have taught her more than clinical lessons about cancer. She has learned what is important and what is not.

"When someone cuts you off on the road, I say, 'Does that really matter?'" Dr. Higman said. "It makes me think about what is really worth it."

The stress on caregivers is being partly addressed at Hopkins by debriefings in which staff members are encouraged to be candid and reflect on cases. To talk about R.J.'s care, they gathered a few days after his death for a brown-bag lunch in a conference room on the oncology floor. There were nurses, attending physicians, medical fellows and residents, and the administrative assistant from the nurses station.

At first, no one said much. Then the feelings came out. How tough it had been to deal with R.J.'s mother, who was so demanding about her son's care. How he had been discharged the year before by another hospital with a recommendation for hospice care instead of more treatment. How he had said he wanted to die at home.

Dr. Higman, who knew the case best, took the lead in the discussion. She said Michele had questioned doctors so hard in the later stages because at the outset, physicians on the Eastern Shore had missed R.J.'s cancer for several months. Dr. Higman took on the case because she felt she could give him some worthwhile time. And because R.J. was so sick in his last weeks, his mother, like many other families, felt more comfortable being with the people who had cared for him so long.

After talking about what happened when R.J. died, there was a long pause.

Dr. Lola Stavroudis, the 27-year-old resident who had been on duty at R.J.'s death, asked, "What do we do now?"

It is a question caregivers struggle with. To help them on an emotional level, Reder gave them a sympathy card to sign and told them she would be there to support them.

They talked practical matters, too. After hearing that on a few occasions when R.J. went into crises, Dr. Stavroudis had been reluctant to call Dr. Higman, the staff came up with a fix. They would set up a procedure to allow residents on the night shift to confer with other doctors about patients who are nearing death.

On ethics matters related to end of life, doctors can go to Hopkins' ethics committee. It gets one to two pediatric cases about every other month, said Cynda Hylton Rushton, a nursing professor who co-chairs the hospital's ethics panel. In most instances, physicians are seeking guidance on scope of treatment, or help in resolving disputes among caregivers or between doctors and families.

Rushton, who also co-leads Hopkins' palliative care effort, said it has pushed for more advanced planning in the difficult cases. Last year, the Hopkins ethics committee initiated a hospitalwide policy on "goals of care," to encourage physicians to change their focus for dying patients. Rather than listing what they can't do - such as resuscitate - they're thinking about what they can do, from a holistic approach, to help the patient and the family. Instead of writing "do not resuscitate," some doctors have begun to write "allow natural death."

PALLIATIVE CARE

Around the country, about 40 percent of children's hospitals say they have adopted some palliative care services, according to their trade association. But experts and advocacy groups such as Children's Hospice International say that most kids who could be helped by these supportive services don't get them.

Many people don't even know what the concept means. Palliative care eases suffering through tactics like pain control and counseling, to comfort patients and families. Whether or not the patient dies, the goal is to maintain hope, if not for recovery, then for quality time and a peaceful, meaningful end of life.

Few hospitals have programs as extensive as Hopkins and six other academic medical centers, where doctors and nurses are pioneering strategies that will be published for others to use as models. Philanthropies donated roughly $1.5 million for the project, which is part of the work of the nonprofit Initiative for Pediatric Palliative Care.

Among the seven hospitals, one is examining its pediatric deaths, to look for patterns in their care. Another hospital is using art therapy for dying kids. Hopkins is the only one working to counter caregiver burnout, through debriefing sessions and other approaches.

Legislation that would fund training and research in pediatric palliative care is expected to be reintroduced in the new Congress. One of the sponsors, a Republican congresswoman from Ohio, said she discovered through personal experience that it can be the medical professionals who don't want to give up.

"There is so little education on this. Medicine needs to treat the pain as well as the illness," said Rep. Deborah Pryce. Her 9-year-old daughter Caroline died of a rare cancer in 1999. Looking back, Pryce isn't sure whether she should have approved all the treatments and wishes she had moved her daughter to hospice earlier.

Insurance rules can be a barrier to hospice care. They specify that a patient must have only six months to live and that the family agree to give up curative treatment, both unappealing to families of these children.

People are testing new models of care that attempt to address hospice limitations. The advocacy group Children's Hospice International has obtained seed money from the federal government to help states reconfigure services to better suit children. Several states, including Virginia, Utah and Kentucky, have finished plans, and a dozen others, including Maryland, are interested.

"The ultimate goal is that no child and family should have to suffer the anguish I've witnessed without the support," said Ann Armstrong-Dailey, founder of CHI. "It's needless suffering."

One big problem is money. The U.S. health care system is set up for acute care, for tests, medicines and surgeries, and that's what insurance companies pay for.

Other realities of today's medical system, such as nursing shortages and complex treatments, can crowd out the time needed for palliative care. Pediatricians say legal pressures are also a factor, steering doctors toward sustaining care even when there is no chance of recovery.

R.J. Voigt, whose family had no health insurance for years, was covered by Medicaid, the federal-state program for the poor. That program paid the bill, which a Hopkins administrator estimated at $3,600 a day for his last few months in the hospital.

Experts believe that putting in place supportive services from the start would reduce that price tag by cutting back on trips to the emergency room, among other things. But health care researchers said that overall, compared with the huge amount of money spent on terminal care of adults, the number of critically ill children, and their tab, is relatively small. So those who pay for the care - private insurers and the federal government, through health programs - haven't looked at the costs.

MIRACLE MAN

A few days after R.J.'s death, physicians let Michele leave the psychiatric ward to walk downstairs to the hospital's old, steep auditorium, Hurd Hall. It is the place where generations of doctors have gathered to learn. This day, they came to honor Ronald Joseph Frank Voigt, who had wanted to be a doctor.

The chaplain, the Rev. Salvatore Livigni, told the physicians and nurses and other staff, "It takes a long time to travel from 'Why have you forsaken me?' to 'Into your hands I commend my spirit.' It is a journey that cannot be rushed. It may take the family years. It may take a lifetime," Father Sal said. "But we are here for them, in silent solidarity."

A year before, Michele Voigt had sat in a similar service, watching another mother grieve for her son. Now, Michele was the one in the front row. A mother whose baby girl was being treated for cancer was in the back row.

R.J.'s funeral was delayed for two weeks, until she could be released to attend. For most of the rest of 2003, Michele's distress was so great that she cycled in and out of psychiatric units, at Hopkins and other hospitals.

"I fought for R.J.'s life for so long," she said, "that I don't know how to stop."

When she wasn't in the hospital, she drove up and down the highways of the Eastern Shore for hours, the normal routines of her life destroyed by R.J.'s sickness and death.

She'd missed three years of her daughter's life, and now she didn't even feel like her mother anymore. In early October 2003, on Kimberly's 14th birthday, Michele woke up and thought she wasn't ready for it. They ate dinner at home. But that night, at bedtime, Kimberly asked something of her mother that she was able to do: "Will you lay next to me until I fall asleep?"

Michele tried to find ways to get back on track. She wrote poems, she joined an aerobics class. Twice last fall, she braved going back to Hopkins and taking the elevator up to the pediatric oncology unit, the eighth floor. Another mother was standing outside R.J.'s old room. Now her son was inside that room, and he was much sicker than before. The handmade sign shouted out his nickname: "Miracle Man."

Brigid Gilmore, R.J.'s favorite nurse, happened to be on that night. She hugged Michele for a long time. "I know you were there," Voigt said to her quietly. "Thank you."

Michele was startled to realize that she missed the routine tasks of caring for her son, even things she had loathed at first, like cleaning his breathing tube. She tried to feel her way back through those weeks and months in the hospitals. She couldn't believe that after all they had gone through, R.J. still died.

Sitting with Father Sal on her second visit to the hospital, she threw photos showing R.J. in his last weeks onto a table.

"Look at his legs! Look how skinny they are! Look at his head!" she shouted at the priest. "I was in denial. I didn't see that he was so sick. I didn't see. How did I not see?"

PARENTS' STRESS

The impact of losing a child is widely considered by psychologists and other experts to be the worst loss a person can experience. These parents are more likely than other victims of loss to suffer a syndrome of complicated grief that includes symptoms that make it hard for them to go on.

When a child has endured a long illness and died, his parents are often depleted, financially, physically and emotionally, researchers say. Michele, for instance, has been unable to return to work as a waitress.

According to new research by Anne E. Kazak, director of psychology at Children's Hospital of Philadelphia, traumatic stress symptoms are common among parents who have children admitted to pediatric intensive care, as well as among parents whose children have cancer. After their children have died, they often can't concentrate, eat or sleep properly.

One Atlanta father, Joe Black, 48, felt so tied to the hospital where his 11-year-old daughter Rachael died that for many nights, he said, the only place he could get sleep was the hospital couch.

In a large Danish study published last year, researchers discovered that bereaved parents - especially mothers - have an increased risk of dying due to such factors as less healthy habits, car crashes, suicides, and stress on their immune systems.

Over the years, other researchers have documented depression, anger and divorce among these parents, but it is unknown how widespread the problems are.

Unlike other types of grief, studies have revealed that as time goes on, the pain can get worse. These parents keep discovering new ways to mourn. For Michele, there was the first snowfall, because R.J. had loved to play in the snow. The people around town who didn't know that R.J. had died and asked how he was doing. The longtime friends who don't know what to say or do, and drop away.

Most bereaved parents find ways to cope, raising money for research, forcing themselves to get up in the morning to take care of their other children. But they are changed.

Their arms ache to hold their child. Some still hear that child crying in the night and run to the bedroom. One report described a mother who worried that as winter approached, her daughter would be cold because she didn't have a coat on when she was buried.

These moms and dads say they are left with little direction about how to handle their surviving children or how often to talk about the death. They don't know what to do with their child's clothes and toys, and many leave them in place. R.J.'s bedroom door was shut for a long time.

Most of the world didn't understand that Michele and other parents couldn't get over it, that they never would. Everyone else thought enough time had passed, that she needed to move on. She wanted to hold on.

No one knows yet what is best to do, but increasingly, scientists believe that helping the parents realize that the child is dying and prepare for it, as well as being there afterward with support - and acknowledging their pain - are crucial. Research backs up what Hopkins staff have learned through surveys and informal conversations: that rather than trying to steer a grieving person away from talking about their loved one, people should let parents remember.

The bereavement coordinator, Reder, leads a monthly support group for bereaved parents, which Michele joins when she has transportation. Reder put together a separate group for the often-overlooked siblings.

It was on a chilly morning last March when Michele awoke, feeling for the first time somewhat like her old self. Her daughter, Kimberly, was giggling and shouting, "Mommy, watch me! Mommy!" The girl was in the front yard, doing sloppy cartwheels across the lawn. Michele thought about how much of Kimberly's life she had missed, and that her daughter, the only child she had left, was growing up.

"I realized she needed me," Michele said.

TRIBUTE SERVICE

Because parents want a connection to the people who shared their greatest grief, the palliative care team has built on a long-standing tribute ceremony for families that now attracts so many that Hopkins had to move it to a larger auditorium.

On a night in May, there were flowers, tables spread with fancy cupcakes and sandwiches, and dressed-up families who had driven from far away.

It felt like a kind of graduation. Michele arrived in a blue dress and matching heels, clutching photos of R.J. to post on one of the easels around the lobby. Kimberly was with her. They seemed close, finishing each other's sentences.

One by one, Michele ran into the mothers she'd known from the oncology floor. Suddenly, they were with their own kind, the only people who knew what they had been through. In the first moments, there were big hugs and smiles. Then the awful reason they were there dawned on them.

"Samantha?" Michele asked hesitantly, looking at the woman she'd known only by her 13-year-old daughter's name. "Yes," the woman nodded. She introduced herself as Loraine Holder, from Randallstown. "She was on the eighth floor. She died peacefully."

They shared the news on other kids, such as J.R. Curtis, whose mother and Michele have stayed close since the days the boys used to play together. They had become buddies at the Ronald McDonald House, a home away from home for children undergoing treatment. Both had cancer, and in April, the younger boy relapsed, his family now facing the same dilemmas as R.J.'s.

At the service, Kimberly, her gray-blue eyes identical to R.J.'s, swung her head around, taking in the photographs of babies and toddlers and teens. "Did all these kids die?" she asked.

Later, family members gathered around a table to inscribe their child's name on a quilt. Michele and Kimberly settled on a red-and-blue square. Michele passed her a fat black pen and watched as Kimberly carefully signed "R.J. Voigt, July 25, 2003." Her mother read it over, nodding.

Standing near was Dr. Higman, the physician that Michele now tells everyone saved her life.

A FALLEN STAR

It wasn't until this fall that Michele saw the one other physician she will never forget. When they met, at first, neither could speak. Then Michele and Dr. Stavroudis, the young resident who had been on duty the night R.J. died, picked up as if no time had passed.

After questioning the doctor about the details of that night, Michele confessed what has haunted her since then.

"I want to know that R.J. forgives me," Michele said. And she spoke the words that so many mothers say: "I promised him I wouldn't let him die."

Every week now, Michele goes to the cemetery. At first, she hated going to the small field behind the church on Deal Island. The graveyard seemed like a place where only old people should be. But it is quiet. The long grasses blow in the wind. She can see the water.

Over time, it has turned into a place his family likes to visit. They brought a birdbath, then the pink Peeps candy at Easter. They added seashells. A birdfeeder went up.

Now, when the family leaves the cemetery, they go to different homes. Michele and her mother no longer live together, as they had during R.J.'s childhood. They say they know that would make R.J. sad.

"It's just like nothing will ever be the same again," Wisnom said. "We've always done everything as a tight family. It's like a star that one of the points fell off of, and it doesn't hang right anymore."

This month especially, they've struggled. They are like thousands of families during the holidays, trying to patch together a life in which one family member is permanently absent. Parents don't know what to do about a family Christmas picture, or how to sign the holiday card when one child is gone. Some bereaved parents continue to hang their child's stocking. Others can't bear to put up a tree.

Michele and her mother know they should celebrate for Kimberly and for R.J.'s two young cousins. But every time Michele sees a Christmas light, she envisions that strand of lights on the wall in Room 817 at Hopkins. She sees the little tree she put up, determined to give her son an early holiday as his death drew near.

Doctors say, though, that those painful moments will blur with time. If they're right, R.J.'s makeshift Christmas will melt into his real last Christmas, when he and his mom left Baltimore and headed over the Bay Bridge in 2002. They weren't expected home, but they surprised R.J.'s grandmom. Wisnom cooked up her mashed potatoes, just the way he liked them, and R.J. and Kimberly each opened a present on Christmas Eve, like they always had.

He was supposed to be driven back to Baltimore for treatment the next morning. But his family will remember that the gift of a snowfall let them keep R.J. at home, for just one more day.


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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