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The webpage at https://www.ncbi.nlm.nih.gov/pubmed/12087642 might be temporarily down or it may have moved permanently to a new web address.

Caring for terminally ill children presents ethical challenges
Open communication with families is key to reducing distress
In 2017, the story of Charlie Gard, a baby in the UK who was born healthy and later diagnosed with a rare, severe genetic condition, captured international headlines when the parents’ wishes conflicted with physicians’ recommendations.
Charlie’s parents were eager to transfer him to the U.S. for experimental treatment, but the baby’s physicians believed his brain damage was too severe and irreversible by the time the treatment was an option, according to BBC news reports.
When doctors recommended withdrawing life support, Charlie’s parents disagreed. After a legal battle, British judges agreed with the physicians and life-sustaining medical treatment was discontinued. Charlie Gard died in July at the age of 11 months.
  The story highlighted the tension nurses experience as they care for terminally ill children during an era when technology has made it possible to save patients who would have died in the past.
How to facilitate open communication

Nurses are in a particularly ideal position to help parents make informed decisions
 For example, parents may have been waiting for weeks for a transplant for a child, but then the child is no longer a candidate as his or her condition deteriorates. Rather than asking family members if they would like to discontinue life support, Walton suggests posing open-ended questions, such as “Tell me how you think your child is doing,” or “Could you share your understanding of your child’s diagnosis,” or “What worries you most?” These types of questions allow family members to gradually grasp what is happening when a patient’s condition isn’t improving.
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Nurses have so much hands-on care of the body, and if we feel the care is not benefiting the patient or is causing suffering, it feels wrong.”
Discontinuing LSMT is a momentous experience for medical professionals, even when they have no question about the clinical correctness of the decision, said Walton.
Guidance on Forgoing Life-Sustaining Treatment
“Nurses have so much hands-on care of the body, and if we feel the care is not benefiting the patient or is causing suffering, it feels wrong,” Walton said. “This is a very intense experience for nurses, and can lead to moral distress.”
Melissa Kurtz, MSN, RN, a NICU nurse at Johns Hopkins Children’s Center, remembers caring for a baby born with a severe birth defect whose family believed the baby would miraculously recover. The medical team felt obligated to continue providing care to respect the family’s religious beliefs, but some nurses asked to be removed from the case, Kurtz said.
They felt distressed using medical interventions when the baby’s condition was not improving. Kurtz continued caring for the baby and realized the patient’s maternal grandmother was a trusted spokesperson for the family. Kurtz asked questions to learn about their spiritual beliefs and build rapport, helping the grandmother understand the medical treatments were not changing the baby’s condition.
“Once the grandmother was on board with the medical team, the communication barrier lifted,” Kurtz said. “The family started to understand that the baby wouldn’t survive, and we talked about the spiritual rituals that would make it the best death possible.”
Moral resilience is vital for nurses
The new guidelines also highlight that each child is entitled to open and honest communication of age-appropriate information about his or her illness, as well as potential treatment outcomes.
 “It is not uncommon for parents to ask clinicians to withhold information from the child, like the diagnosis or the fact that the child might die, and nurses are often caught in the middle,” Wocial said. Conversely, children sometimes know how serious their illness is and want to protect their parents, but secrets are rarely helpful, she said. “It is an ethical obligation for physicians to provide honest information to the patients and their families on an ongoing basis,” Wocial said.
The new guidelines allow nurses to voice the importance of open communication in these situations, and this gives children the opportunity to accomplish goals they may have before dying, such as speaking to certain family members or a special teacher.
“These complex ethical situations are only going to increase as technology develops, but individual moral resilience alone will not shift organizational structures that contribute to moral distress,” she said. “Nurses and organizations must work together to create conditions that foster moral integrity.”

The original guidelines were written after the Reagan administration passed the Baby Doe Amendment, which restricted caregivers from considering quality of life in LSMT decisions for infants, except in certain extreme cases.
During the following years, the pendulum shifted toward giving parents more authority in ethically complex decisions, Rushton said, but the new guidelines make it clear these situations require a shared decision-making process between families and the medical team.
“Healthcare professionals have an important role in this process and should not be transferring their authority to parents to make the decisions on their own,” she said.
“Nurses can ask families if they have ever talked about what to do if things don’t go the way they hope,” she said, noting such questions prompt important discussions about whether to continue using medical interventions.
Keeping the lines of communication open is not only beneficial for the families, but also for the nurses who carry the burden of treating children who are terminally ill.
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