Portal de Periódicos da CAPES

Pediatric Palliative Care

2004; Wolters Kluwer; Volume: 26; Issue: 17 Linguagem: Inglês

10.1097/01.cot.0000292277.96386.e2

1548-4688

Margot J. Fromer,

Family Support in Illness

Pediatric palliative care is both similar to and different from adult palliative care. The biggest difference, of course, has to do with the patients' young age. “Taking care of dying children needs to be understood as a developmental concept,” notes Bruce Himelstein, MD, Director of the Pediatric Palliative Care Program at Children's Hospital of Wisconsin. “Kids don't have as many emotional burdens as adults. They tell it like it is, and most of them want to be told what's what. “The way children react to having cancer depends in large part on what they understand—and what their parents allow them to know,” Dr. Himelstein continued. “How we communicate with them depends on their age. We never lie to children, and we try to help them maintain their sense of self and their place in the world.” Melody Brown Hellsten, MS, RN, CPON, a pediatric nurse practitioner and Program Coordinator of the Pediatric Supportive Palliative Care Program at Christus Santa Rosa Children's Hospital in San Antonio, TX, agreed that age is a major factor: “A school-age child is less overt about using language than an adolescent is. They talk about heaven, they relate their dreams, or maybe tell a story about a grandparent or pet who died. But most of them know what death means.” Even toddlers are not as unaware as we believe. Ms. Hellsten recalled one of her patients, a three-year-old girl, who was sitting on her mother's lap while the physician and her parents (who practiced a strong Christian faith) discussed the fact that treatment had failed and that there was nothing left to offer except supportive care. The child looked up, and said, very clearly, “Let's pray.”Figure: Bruce Himelstein, MD: “Taking care of dying children needs to be understood as a developmental concept. Kids don't have as many emotional burdens as adults. They tell it like it is, and most of them want to be told what's what. The way children react to having cancer depends in large part on what they understand—and what their parents allow them to know.”This was not a knee-jerk reaction to religious indoctrination, Ms. Hellsten said. “That child knew what was happening. The problem with very sick or dying children of any age is that health care providers don't know how to talk to them. When we don't answer their questions, we're not deliberately trying to be evasive. We just don't know what to say.” Families differ widely in the way they relate to their children. Most parents don't know how to talk to kids about something this serious, and many not only don't want professional caregivers to talk about death, they also don't want to do it themselves. Kids Know Anyway They need to shield their children from the seriousness of the illness. The problem with this approach, said everyone interviewed for the article, is that kids know anyway. They realize they're being hoodwinked and blindsided, and they don't like it. “Kids know more than we think they do, and it's not fair to them to beat around the bush,” Ms. Hellsten said. She said she will never tell a child an outright lie, but she does temper conversations to meet needs. “We are not privy to the conversations that parents have with their children, but from the way the child behaves and from the way he or she interacts with parents, we can get a good sense of how things are,” she said. Mark Leenay, MD, Medical Director of Transitions and Life Choices, Palliative Care and Hospice, for Fairview Health Services in Minneapolis, added that age is critical in the matter of consent for and assent to treatment. Consent is the legal permission to treat, with which all physicians are familiar. Assent is a spongier thing: the agreement of a minor to go along with the treatment that the physician has proposed and to which the parents have consented. Children are usually able to give assent from age 13 or 14 on, sometimes even younger. Assent is not a legal construct, but it does respect children's decision-making capacity. If a child who understands the ramifications of treatment does not assent to it, he or she may be coerced. Children Ask Questions about Their Illness Children ask questions about their illness, sometimes verbally and sometimes not. Again, what they want to know depends on how old they are. Dr. Himelstein said that elementary school children are often concerned about their parents and siblings and ask, “Who will take care of my family after I die?” Teenagers tend to be both philosophical (“Why me?” “What did I do to deserve this?”) and concerned about their physical selves: hair loss, amputation, scars, and the like.Figure: Mark Leenay, MD: “Feelings are always expressed in context, and it's our job to find out what children mean when they say this or that. For instance, we can ask how they have coped with tough times in the past, and we can offer them poetry, art, and music therapy. But children are emotionally labile…One minute they're down in the dumps and the next they're engrossed in a computer game. You have to provide help in doses small enough for them to tolerate.”The big question, the most gut-wrenching for parents and caregivers is, “Am I going to die?” Dr. Himelstein was reluctant to say how he answered it. “It depends on a lot of things: what the child is really asking, what he or she understands about death, what spiritual and cultural influences are involved.” Dr. Leenay said that by age 5 to 7, children understand the permanence of death. He said he typically begins his answer by asking what other people have said or what they have heard. He also puts his answer off until he can get the parents into the room for the discussion—a direct tip-off for most children about the nature of the answer. “Kids usually know the score before they ask,” he said. “Either they've guessed or they've overheard people talking, or maybe had a dream.” Javier R. Kane, MD, Director of the Pediatric Supportive and Palliative Care Program at Christus Santa Rosa Children's Hospital in San Antonio and Associate Professor of Pediatrics at the University of Texas Health Science Center there, said, “I always tell my patients that if I think they're going to die, I'll let them know—and I do.” “You're never going to find the perfect words,” Ms. Hellsten remarked. “But if you speak from your heart and what you say is genuine, that's what matters. And the children know it. So do their parents.” Pain & Other Symptoms Treatment of cancer pain in children is limited by two major factors: First, pediatric labeling does not appear on many drugs that might be of benefit, especially long-acting opioids. Second, clinical trials are difficult to conduct because potential subjects are few and far between. Pediatric labeling does not appear on many pain medications that might be of benefit, especially long-acting opioids. However, the pediatric oncologists interviewed for this article say that although pain and other symptom-control techniques are similar to those used for adults, the assessment is different. Dr. Leenay noted that non-palliative care pediatricians tend to use sedative drugs rather than opiates for pain, but those experienced with very ill or dying children use adult drugs in titrated doses.Figure: Javier R. Kane, MD: “It's important to get to know the children and their families as unique individuals, how they're experiencing the illness, and what their issues are. Letting children explore their feelings takes a lot of time because often they need help to verbalize their feelings. This requires an interdisciplinary approach and a strong infrastructure.”Lyn Ceronsky, APRN, MS, System Director for Transitions and Life Choices at Fairview Health Services, said that pain control and other symptom management are typically not performed as well in childhood cancer as for adults. “Clinicians are not prepared for it,” she said. “They don't learn about pediatric palliation in medical school or during residency. In addition, she continued, “kids are shy about discussing the inner workings of their bodies. Whereas constipated adults will complain about it, children will say nothing out of embarrassment. They hesitate to mention how much pain they're in for fear that pain indicates worsening of the disease, because they haven't gotten relief in the past, they don't have the energy to ask for help, or they don't know how to ease pain without drugs. “So they suffer in silence. It's frustrating for everyone, because pediatricians really want to make their patients comfortable, but they don't know how, and many of them are not adept at nonverbal communication, which is so much a part of childhood.” Fear, Anger, Sadness Children with cancer are angry, even if they don't know how to express it. They're also afraid and sad. Helping them through these feelings and not allowing their quality of life to spiral downward is one of the most difficult tasks of palliative care. “We give them the opportunity to express what they want to,” Dr. Himelstein said. Often that expression is nonverbal, especially for toddlers. Art therapy plays an important role here, as does play therapy. I like to talk to the children separate from their parents, especially if the latter deny the seriousness of the situation,” he added. But what if the parents won't allow that? “Then we have to accept it—difficult and frustrating as it is,” he said. “Our job is to meet the family and the patient where they are, and if they don't want to talk, we can't make them.” It's important to get to know the children and their families as unique individuals, how they're experiencing the illness, and what their issues are, Dr. Kane said. “Letting children explore their feelings takes a lot of time because often they need help to verbalize their feelings. This requires an interdisciplinary approach and a strong infrastructure.” Feelings are one of the central issues in palliative care, Dr. Leenay noted. “They are always expressed in context, and it's our job to find out what children mean when they say this or that. “For instance, we can ask how they have coped with tough times in the past, and we can offer them poetry, art, and music therapy. But children are emotionally labile; they don't stay on task for long. One minute they're down in the dumps and the next they're engrossed in a computer game. You have to provide help in doses small enough for them to tolerate.” Dr. Himelstein added that this is one of the areas that cries out for research: “We need to develop predictive tools about how to approach and talk with very sick children and their families.” First of Two Parts This is the first part of a two-part series. This article focuses on the human—and humane—aspects of pediatric palliative care. The second part will examine the philosophical underpinnings and the gaps in the provision of care.