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When parents of a critically ill child ask a physician to withhold information from the patient, it usually indicates the family needs help coming to terms with the illness. This should be resolved with support and counseling — not a called meeting with the ethics committee, say experts in pediatrics and ethics.
"I don’t see it happen that much anymore. When I first started, it was a fairly typical approach that families didn’t want kids to know about a really bad diagnosis," says David Gerber, PhD, administrative director of patient and family services and chair of the ethics committee at All Children’s Hospital in St. Petersburg, FL. "But if it does happen, it is usually not as much of an ethical issue as many people think it is. What it is signaling is an issue that needs to be worked on in that family."
Parents may still be in denial about the seriousness of their child’s condition. They may be dealing with feelings of anger at themselves or caregivers for not being able to heal the child, or guilt for having "allowed" the child to become sick. Or in cases of children with an illness that may carry social stigma, such as HIV or AIDS, the parents may want to protect the child from harmful actions by others, says Mali Mann, MD, a child psychiatrist and psychoanalyst and member of the clinical faculty at Stanford University Medical Center in Palo Alto, CA.
"In cases such as HIV, the family itself may be very isolated or feel very isolated," she notes. "If a parent is infected, he or she may be dealing with his or her own illness and feelings of shame and isolation, and may want to keep that information a secret, even from the child."
Some parents simply want to protect their children from the emotional burden that comes with having a serious medical condition or to feel significantly "different" from their peers, says Joel Frader, MD, professor and interim division head of general academic pediatrics at Northwestern University Medical School in Chicago. Frader also serves as chair of the ethics committee at Children’s Memorial Hospital, also in Chicago.
In addition to children with life-threatening or chronic medical conditions, Frader has encountered parents who did not want their children to know they had other conditions, such as epilepsy. "It is not a request that is received every day," he says. "But certainly, it isn’t a rare occurrence."
In general, getting the parents and, if possible, other family members together to discuss these issues will lead to the parents’ decision to tell the child about his or her medical condition, say Mann and Gerber. "It is often helpful to sit down and have a conference with the parents and physician, perhaps with the help of a psychiatrist or analyst or counselor to address their particular concerns," says Mann.
In cases where the family feels isolated from the community, or is afraid of the reactions of the child’s peers at school, counselors can talk about ways that the family can get support or ways that the child’s condition can be communicated to school officials to maintain confidentiality. And, they can help the parents and child determine how they want to communicate information about the child’s illness to other people.
It should be emphasized to parents, however, that withholding the knowledge that the child has a serious illness, or may even in fact be dying, robs the child of having a voice in medical decisions that are made about his or her care. Further, withholding the truth can diminish or destroy the child’s trust in parents and caregivers. "In 90% of the cases that I have seen, the child already knows by the time he or she is told [of the diagnosis]," says Frader.
Children are very perceptive, agrees Gerber, and, if they are ill or they are often in a hospital or other health care setting and see serious discussions between their parents and caregivers, they will pick up cues about their condition. "When they are all of a sudden involved in treatment plans that are having some pretty harsh effects on them, or when they begin to start feeling really, really lousy, nine times out of 10, they will ask questions."
Sometimes a family’s cultural background will preclude caregivers from giving medical information to children, says Gerber. "What we were talking about before is from a fairly homogenized, Americanized value system," he explains. "Our expectation is that, of course, kids need to be told what the diagnosis is. But, when we see families from other cultures — we are an international referral center — we have some who come from a very maternalistic or paternalistic society, in which the expectation is that we will deal only with the parent and the parent will communicate to the child what they want the child to know."
This may often cause major disagreements between the physician’s, caregivers’, and the parents’ wishes. "Then, we run into a problem and the ethics committee gets consulted," he says. "Then it is a matter of trying to decide, not what is globally right, but what is right for that particular family."
While efforts should be made to argue the benefits of informing the child, ultimately, caregivers should not supersede their wishes over the wishes of the parents in any situation, including families with different cultural backgrounds, he says. "The position that we take is that families, having existed well with their coping measures before they came to this hospital [and] in order for them to live well after they leave here, how can we go in and change their value system to make it match our own, just so that we can feel more comfortable about doing something?" he asks.
Even when children are told of their diagnosis and/or that they are terminally ill, it is important the information be communicated in a way that is appropriate to the child’s age and allows the child to understand his or her situation, without overwhelming or frightening the child, say experts.
"The idea of death, kids as young as 4 to 7 can begin to grasp that," says Jacqueline Ater, MA, a Rochester, NY-based speech pathologist and consultant who helps physicians and caregivers communicate with patients’ families. "When you look at someone who is 12 or 13, we are really beginning to think about [that person] as a young adult. You need to determine the information capacity of the child you are talking about."
Considering the level of vocabulary, tone of voice, and speech patterns that are used is very important, she adds. "The information capacity of the child guides you in deciding what type of language that you use; you may just use simple phrases and short sentences with a younger child, but as you get to adolescents and teen-agers, you can use complex sentences with a lot more, ifs,’ whens,’ and buts.’"
Who communicates the information also is important. If a physician wants to talk to the child, it may be advisable to have other caregivers that the child feels comfortable with be present as well. "Usually, there is someone on the care team that the child has especially bonded with, and that person may be able to help," she notes.
The clinicians also should be prepared to read nonverbal cues from the child to determine whether the child is processing the information or is becoming confused, overwhelmed, or frightened. "You may want to stop periodically and ask questions, like, Do you understand what I am saying?" she notes. "You need to remember to check in with the child to see how well they are handling what you are saying." Ideally, telling a child about his or her condition is a process that takes place over time, so that information is meted out in manageable doses as the child becomes ready to receive it, she adds.
Gerber recommends asking children questions about how they feel about their condition, about the care they are receiving, and if they have any questions for the doctors or nurses. "What kids are most afraid of, they tell us, is what they do not know," he says. "What they want to know is what they are going to be asking. If we avoid that answer, if we try to sugarcoat it, if we try to handle it in a way that is outside their developing value system, we are only going to increase their fear level."
And, even though it’s important to be honest with children about their diagnosis, it also is important to communicate that information gently, he says. "Even with a 14- or 15-year-old who is fairly mature, if you tell them, The doctors have done all they can for you, there is really no hope that you can survive this.’ If you do it in a way that is really heavy-handed, the kids can give up," he warns.
"They can just decide to stop living at that point. But, there are a lot of kids in terminal stages who continue to go to school and may have very specific goals about getting to one more prom, or they may want to see a sibling do something very special. It is not so much a medical ethics issue as a family care issue. Don’t presume or assume what a family needs, you need to assess," explains Gerber.
Although a lot of attention is paid to family problems with talking to children about terminal illness, a major barrier may be clinicians themselves who are unwilling to accept that the child is dying, says Gerber. "I am close to a number of pediatricians, and I know that they got into medicine to help children get better," he explains. "When kids die, is that a failure of medicine? Is it a personal failure? That is an issue."
The nation’s health care system has not done a good job of dealing with end-of-life issues in children, and many physicians have difficulty "giving up" and switching from curative care to palliative care, Gerber believes. "Very often, the children are there first [in terms of acceptance], the moms and dads get there second, and the physicians get there third in terms of saying, Enough is enough.’"
Some of the ethics consultations in the hospital have involved children and parents who were ready to stop pursuing a cure and physicians who still wanted to try, he adds. "If clinicians would be aware of that, and recognize that a child’s dying is not a failure of medicine. And, no matter how good we are professionally or medically or as a facility, some kids are still going to die," Gerber says. "Until we get over our egocentricity that we should be able to cure everything, we are going to have a difficult time talking about this."
• Joel Frader, Children’s Memorial Hospital, 2300 Children’s Plaza, Chicago, IL 60614.
• Mali Mann, Stanford University Medical Center, PBS C305, Stanford, CA 94305-5717.
• David Gerber, All Children’s Hospital, 801 6th St. S., St. Petersburg, FL 33701. Telephone: (727) 898-7451.
• Jacqueline Ater, 181 Beaconview Court, Rochester, NY 14617. Telephone: (716) 342-7867. Fax: (716) 342-6786. E-mail: firstname.lastname@example.org.