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The care you give to a child with a life-threatening condition varies on the individual circumstances, says Marcia Levetown, MD, FAAP, a member of the Committee on Bioethics for the Elk Grove Village, IL-based American Academy of Pediatrics.
Here are three case studies, with Levetown’s suggestions for how to manage each:
Case No. 1: An 8-year-old child is admitted to the ED for fever of three days’ duration, increasing cough and vomiting, and increased seizure activity. He has a fever of 39, respiratory rate of 35 with flaring and retractions, and a heart rate of 130. He is pale. He has crackles at the right lower lung field posteriorly. He also has flexion contractures in all extremities and is cachetic. He has a G tube. Past medical history includes four admissions this year alone for pneumonia, birth asphyxia, seizure disorder, and inability to speak. He does not recognize his family, even when well. At his best, he seems to smile when music is played. He has a loving mother and two siblings, ages 8 and 4. The parents are divorced, and the mother is on public assistance because of the care needs of this child have caused her to lose several jobs.
You should ask the following questions, says Levetown:
• Is it appropriate to treat the decisions regarding the goals of care for this child the same as for an otherwise healthy child with pneumonia?
• What is the cause of this pneumonia? Is it likely to recur?
• Is this child terminally ill?
• Is he a candidate for palliative care?
• Is it required to intubate him if he deteriorates?
• How does one broach the topic of goals of care with his mother?
• Does she have the ethical and legal right to forgo life-prolonging medical interventions on his behalf?
• What positive things can be offered to her if she chooses this route? Does Child Protective Services or an ethics committee have to be involved?
This child has recurrent aspiration pneumonia, and it is likely to be recurrent and the eventual cause of his death, says Levetown. "Which episode will be his last is unpredictable. Thus, there is a need to institute palliative care before this occurs."
His mother and siblings have sacrificed a lot for this child, but he might not be deriving much benefit from the efforts they are making, says Levetown. "It is a loving and selfless act to allow him to die in peace if it is his time," she says. "This is an ethically supportable decision and is within the law."
Families need permission to feel they are not abandoning their vulnerable children by making such choices, she says. "The positives that can be offered include the willingness to aggressively treat any sensation of shortness of breath and fever and increase the chances that his family will be present when he dies."
Case No. 2: A 13-year-old of normal intelligence with disseminated neuroblastoma has never been told she has cancer, despite the fact that she has been to cancer camp and has been admitted to the oncology ward four times a year on average for three years. Her cancer is progressing. She presents to the ED in a lot of pain from tumor in her pelvis and femur, as well as new onset of abdominal pain. A CT reveals numerous large, centrally necrotic nodes.
She says she knows she has cancer, and she is tired of all the medical treatments. She does not want to engage in any more efforts to prolong her life. She realizes she has been getting rapidly worse, having nose bleeds, etc., and increased bone pain. She does not want to be stuck any more; she wants to be in her bed at home. She is not depressed. She begs you to free her from her pain and assist in getting her mother to understand that she cannot keep doing this.
The nurse’s role is to gently educate the mother that the child already knows she has cancer and is dying, and encourage open communication between them, recommends Levetown. "You should also be honest with the child, answering direct questions truthfully and in language the child can understand."
Be an advocate for improved communication between the health care team and the family, says Levetown. "You can also call an ethics consult if there is continued unwillingness on the part of the family to speak with the child about her condition and preferences."1,2
Case No. 3: A 15-year-old male is brought to the ED with a gunshot wound to the chest. He is not responding to closed chest massage, and he undergoes emergent sternotomy and open-chest massage. His atrium has a back wall blow out and, despite heroic efforts to revive him, he dies shortly thereafter. His parents are waiting in the hall.
After breaking the bad news in a compassionate manner in an appropriate environment, offer to take the parents to a private room to be with their son as long as they like, Levetown advises. "Offer to call their chaplain or one from the hospital, get the social worker to help them with calls, and ask child life to assist with the sibling issues."
Levetown also recommends a coordinated program for bereavement follow-up, including a bereavement card.
1. AAP Committee on Bioethics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 1995; 95:314-317.
2. King NMP. Children as decision makers: Guidelines for pediatricians. J Pediatr 1989; 115:10-16.