No 6-Month Limit on Compassionate Care
2007; Elsevier BV; Volume: 8; Issue: 3 Linguagem: Inglês
10.1016/s1526-4114(07)60070-5
ISSN2377-066X
Autores Tópico(s)Ethics in medical practice
ResumoTORRANCE, CALIF. — The 6-year-old with a brain tumor died at 11 p.m. on Christmas Eve, her last smile coming when the family's new puppy scrambled onto her bed. Her brother and sister, ages 10 and 4, had unwrapped some of their presents early so she could share in Christmas.“I think this death went as well as it possibly could,” said Karen Graves, R.N., who works as a hospice nurse.The TrinityKids Care team—the pediatrician, the chaplain, the social worker, the home health aide, the nurses—gathered around a conference table and listened raptly, each having contributed to the care of Carenna after her family had been told, “There is nothing more we can do.”The phrase infuriates Dr. Glen Komatsu, team medical director for TrinityKids Care, part of a nonprofit hospice serving Los Angeles and Orange County, Calif.“Nothing is further from the truth.”Carenna's pain was managed, her medical complications addressed, her fears aired. Her family was comforted and listened to. Her childhood was honored by allowing a puppy's kiss—undeterred by hospital policy, medical equipment, or valiant efforts to further extend her life, however painfully.Like any child with a life-threatening illness, she deserved relief from her suffering, be it physical, emotional, or spiritual, said Dr. Komatsu, a former neonatologist and fellowship-trained expert in palliative care.Her family deserved honesty through every step of her illness, so they could weigh the pluses and minuses of each new test and each invasive procedure.Ironically, the children of middle-class and wealthy families sometimes suffer the most, he said. “Their parents may have the resources to keep going on and on, traveling around the country to find a cure.” Technology and medical advances have only increased the options of how to keep a child alive a bit longer, said Dr. Komatsu, even as their physicians stray further from their oath to “do no harm.”“We meet children who have been tragically savaged by medical procedures,” said patient care manager Gay Walker, R.N. “If society is doing this with 90-year-olds, they certainly are not going to forgo [extraordinary measures] for a child. In both cases, it is tragic and sad and not appropriate,” she said.In California, a growing number of pediatric specialists have begun to question what therapeutic lessons may have been lost along the way as cures have conquered some of the most ravaging diseases of childhood.They object to the stark line between “curative” and “palliative” care, which has proved a thorny issue in pediatrics, where much care of critically ill children takes place in the fast and furious, multisubspecialty world of academic centers.Attention and resources devoted to quality of life issues often failed to materialize until a child was thought to have less than 6 months to live and could be referred for hospice care.It can be a heart-rendingly difficult call. Many physicians “just cannot bring themselves to say to a parent, ‘your child is dying,’” said Dr. Komatsu.The problem with reserving hospice services for children close to death is that pain control and comfort issues, philosophical discussions, and supportive family care remain elusive for many children fighting malignancies, lethal congenital anomalies, and neurodegenerative diseases.To ensure that it happens from day 1 of a child's illness, representatives of children's and university hospitals, hospices, community groups, and the Children's Specialty Physicians Association formed the Children's Hospice and Palliative Care Coalition.They celebrated a major legislative victory in November 2006 when Gov. Arnold Schwarzenegger signed into law an act establishing pilot pediatric palliative care programs throughout the state and permitting Medi-Cal hospice benefits to be initiated at the same time as curative treatment.Key to the legislation is a clause that extends hospice services to children “whose conditions may result in death, regardless of the estimated length of the individual's remaining period of life.”To Dr. Komatsu, the pilot program offers the possibility of drawing community pediatricians back to the bedsides of their most seriously ill patients, whose needs extend far beyond complex surgical procedures or grueling chemotherapy regimens.“Pediatricians naturally embrace families and ethics. Many of them would be great [at delivering palliative care] given the opportunity and a little bit of training, support, and mentoring.”As he sees it, his role is to treat pain and other symptoms, to educate and communicate with families, and to coordinate care. It's not so very different from what every pediatrician does, every day.Indeed, the most valuable skills he has cultivated have less to do with doing everything possible than with simply providing comfort. “Sometimes I just sit with them and hold their hands.”He answers siblings' darkest questions: “Is it going to happen to me, too? Is it because I told her she was ugly?”He sits with their families and discusses options for today and tomorrow, true to the role of a “sensei,” which means both “doctor” and “teacher” in the native Japanese of his ancestors.On a recent home visit, he gently took Cameron Lee, born months ago with trisomy 18, from the arms of her grandmother.He listened to the infant's heart and reassessed the need for a feeding tube. He counseled the parents on the procedure she needs and chatted with Cameron's siblings.In stark contrast to the cold and shiny wonders of medical technology, he brings “no magic” to the bedside.“I used to think I had to have the exact right words to say. We all struggle in the face of tragedy.” Just being there, he finds, is often more than enough.Back at TrinityKids Care headquarters, there are cases to review: the 3-year-old victim of a near drowning whose family has faced “huge dimensions of grief”; the 3-week-old born with tricuspid atresia and stenosis; the gravely ill 13-year-old with cerebral palsy whose family is preparing to take her to Mexico for a final goodbye with grandparents.Medications and symptoms are reviewed, signs of family trouble are outlined, and care plans are adjusted.Dr. Komatsu mostly listens, considering the observations and concerns of team members who traverse vast distances in Los Angeles and Orange County to meet the minute-to-minute medical and social needs of the patients in their homes.He is nothing without his team, he said.“It's not about the doctor. If you saw who does most of the talking here, it's not me,” he said. “It's humbling work. You just don't have all the answers.” TORRANCE, CALIF. — The 6-year-old with a brain tumor died at 11 p.m. on Christmas Eve, her last smile coming when the family's new puppy scrambled onto her bed. Her brother and sister, ages 10 and 4, had unwrapped some of their presents early so she could share in Christmas. “I think this death went as well as it possibly could,” said Karen Graves, R.N., who works as a hospice nurse. The TrinityKids Care team—the pediatrician, the chaplain, the social worker, the home health aide, the nurses—gathered around a conference table and listened raptly, each having contributed to the care of Carenna after her family had been told, “There is nothing more we can do.” The phrase infuriates Dr. Glen Komatsu, team medical director for TrinityKids Care, part of a nonprofit hospice serving Los Angeles and Orange County, Calif. “Nothing is further from the truth.” Carenna's pain was managed, her medical complications addressed, her fears aired. Her family was comforted and listened to. Her childhood was honored by allowing a puppy's kiss—undeterred by hospital policy, medical equipment, or valiant efforts to further extend her life, however painfully. Like any child with a life-threatening illness, she deserved relief from her suffering, be it physical, emotional, or spiritual, said Dr. Komatsu, a former neonatologist and fellowship-trained expert in palliative care. Her family deserved honesty through every step of her illness, so they could weigh the pluses and minuses of each new test and each invasive procedure. Ironically, the children of middle-class and wealthy families sometimes suffer the most, he said. “Their parents may have the resources to keep going on and on, traveling around the country to find a cure.” Technology and medical advances have only increased the options of how to keep a child alive a bit longer, said Dr. Komatsu, even as their physicians stray further from their oath to “do no harm.” “We meet children who have been tragically savaged by medical procedures,” said patient care manager Gay Walker, R.N. “If society is doing this with 90-year-olds, they certainly are not going to forgo [extraordinary measures] for a child. In both cases, it is tragic and sad and not appropriate,” she said. In California, a growing number of pediatric specialists have begun to question what therapeutic lessons may have been lost along the way as cures have conquered some of the most ravaging diseases of childhood. They object to the stark line between “curative” and “palliative” care, which has proved a thorny issue in pediatrics, where much care of critically ill children takes place in the fast and furious, multisubspecialty world of academic centers. Attention and resources devoted to quality of life issues often failed to materialize until a child was thought to have less than 6 months to live and could be referred for hospice care. It can be a heart-rendingly difficult call. Many physicians “just cannot bring themselves to say to a parent, ‘your child is dying,’” said Dr. Komatsu. The problem with reserving hospice services for children close to death is that pain control and comfort issues, philosophical discussions, and supportive family care remain elusive for many children fighting malignancies, lethal congenital anomalies, and neurodegenerative diseases. To ensure that it happens from day 1 of a child's illness, representatives of children's and university hospitals, hospices, community groups, and the Children's Specialty Physicians Association formed the Children's Hospice and Palliative Care Coalition. They celebrated a major legislative victory in November 2006 when Gov. Arnold Schwarzenegger signed into law an act establishing pilot pediatric palliative care programs throughout the state and permitting Medi-Cal hospice benefits to be initiated at the same time as curative treatment. Key to the legislation is a clause that extends hospice services to children “whose conditions may result in death, regardless of the estimated length of the individual's remaining period of life.” To Dr. Komatsu, the pilot program offers the possibility of drawing community pediatricians back to the bedsides of their most seriously ill patients, whose needs extend far beyond complex surgical procedures or grueling chemotherapy regimens. “Pediatricians naturally embrace families and ethics. Many of them would be great [at delivering palliative care] given the opportunity and a little bit of training, support, and mentoring.” As he sees it, his role is to treat pain and other symptoms, to educate and communicate with families, and to coordinate care. It's not so very different from what every pediatrician does, every day. Indeed, the most valuable skills he has cultivated have less to do with doing everything possible than with simply providing comfort. “Sometimes I just sit with them and hold their hands.” He answers siblings' darkest questions: “Is it going to happen to me, too? Is it because I told her she was ugly?” He sits with their families and discusses options for today and tomorrow, true to the role of a “sensei,” which means both “doctor” and “teacher” in the native Japanese of his ancestors. On a recent home visit, he gently took Cameron Lee, born months ago with trisomy 18, from the arms of her grandmother. He listened to the infant's heart and reassessed the need for a feeding tube. He counseled the parents on the procedure she needs and chatted with Cameron's siblings. In stark contrast to the cold and shiny wonders of medical technology, he brings “no magic” to the bedside. “I used to think I had to have the exact right words to say. We all struggle in the face of tragedy.” Just being there, he finds, is often more than enough. Back at TrinityKids Care headquarters, there are cases to review: the 3-year-old victim of a near drowning whose family has faced “huge dimensions of grief”; the 3-week-old born with tricuspid atresia and stenosis; the gravely ill 13-year-old with cerebral palsy whose family is preparing to take her to Mexico for a final goodbye with grandparents. Medications and symptoms are reviewed, signs of family trouble are outlined, and care plans are adjusted. Dr. Komatsu mostly listens, considering the observations and concerns of team members who traverse vast distances in Los Angeles and Orange County to meet the minute-to-minute medical and social needs of the patients in their homes. He is nothing without his team, he said. “It's not about the doctor. If you saw who does most of the talking here, it's not me,” he said. “It's humbling work. You just don't have all the answers.” UCLA Forms Comfort TeamsThe Children's Comfort Care Resource Program at the University of California, Los Angeles, reaches out to seriously ill children and their parents and siblings as they confront life-and-death choices.But the effort doesn't stop there.Soon, Comfort Care teams made up of health care professionals will routinely serve as advocates for patient care at the high-tech, tertiary hospital.“We have some children who are awaiting their second or third organ transplants,” said Elana Evan, Ph.D., the clinical psychologist coordinating the program, a patient-centered effort aimed at improving the quality of each child's days.“We will be asking that child, depending on the child's verbal and cognitive ability, as well as the family, how would you like to live your life, given what you have to endure?”Not long ago, palliative care was considered only when curative care was no longer an option for a child.Those “either/or” days are gone, said Dr. Evan. Issues of pain and symptom control, emotional support, and family impact are to be prominently featured in each care plan.When one attending subspecialist takes over a case from another subspecialist, racing against time, the program will represent the child's wishes, the family's values, and an abiding sense of the child's pain and suffering. The Children's Comfort Care Resource Program at the University of California, Los Angeles, reaches out to seriously ill children and their parents and siblings as they confront life-and-death choices. But the effort doesn't stop there. Soon, Comfort Care teams made up of health care professionals will routinely serve as advocates for patient care at the high-tech, tertiary hospital. “We have some children who are awaiting their second or third organ transplants,” said Elana Evan, Ph.D., the clinical psychologist coordinating the program, a patient-centered effort aimed at improving the quality of each child's days. “We will be asking that child, depending on the child's verbal and cognitive ability, as well as the family, how would you like to live your life, given what you have to endure?” Not long ago, palliative care was considered only when curative care was no longer an option for a child. Those “either/or” days are gone, said Dr. Evan. Issues of pain and symptom control, emotional support, and family impact are to be prominently featured in each care plan. When one attending subspecialist takes over a case from another subspecialist, racing against time, the program will represent the child's wishes, the family's values, and an abiding sense of the child's pain and suffering.
Referência(s)