Caring for terminally ill children presents ethical challenges

EDITOR'S NOTE: Heather Stringer is a freelance writer.
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 about their terminally ill children because they typically spend the most time with patients and families — though helping families understand a child’s medical situation is somewhat of an art.
  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.” — Mary Walton, MSN, MBE, RN

Discontinuing LSMT is a momentous experience for medical professionals, even when they have no question about the clinical correctness of the decision, said Walton.

To help medical teams navigate these ethically delicate situations, the American Academy of Pediatrics released an updated version of the Guidance on Forgoing Life-Sustaining Treatment in September 2017. The previous guidelines dated back to 1994, and the new recommendations highlight the fact that foregoing LSMT is “ethically supportable when the burdens of treatment outweigh the benefits to the child.”

“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.
Although the AAP’s recommendations can guide medical professionals in ethically complex cases, these situations still take an emotional toll, Rushton said. The American Nurses Association addressed this last year by releasing a report titled "Exploring Moral Resilience Toward a Culture of Ethical Practice: A Call to Action," urging nurses and organizations to focus on cultivating moral resilience. Nurses can increase their resilience by learning skills like self-regulation, self-care and mindfulness, but organizations also have a responsibility to create avenues for support, such as processes for nurses to raise ethical concerns and training to build ethical competence, Rushton said.
“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.”
“We have the technology to suspend patients between life and death more than ever before, but these new treatment options have also put incredible burdens on families and staff as they make decisions about whether to withdraw life-sustaining medical treatment,” said Mary Walton, MSN, MBE, RN, a nurse ethicist at Hospital of the University of Pennsylvania in Philadelphia.
This emphasis is particularly valuable because there has been a shift in recent years toward family-centered care, and as a result, medical professionals may feel hesitant to recommend withdrawing life support when parents insist on aggressive treatment, said Cynda Rushton, PhD, RN, FAAN, the Anne and George L. Bunting professor of clinical ethics at Johns Hopkins School of Nursing and the Berman Institute of Bioethics in Baltimore.
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.
Parents also may feel overwhelmed when asked to make decisions about clinical details such as whether to insert a tracheostomy or sign a do not resuscitate form, but these issues may become irrelevant if parents first consider their goals, said Indiana University Health nurse ethicist Lucia Wocial, PhD, RN.

Open communication with families is key to reducing distress

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By Heather Stringer
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