When parents face end-of-life choices for their children, talking about it is much different than officially documenting it. That insight, shared by Erin Mullaney, MSN, RN, PNP-BC, is one of many expressed by nurses involved with advance directives for pediatric patients. Relationships, timing and understanding are key considerations for nurses in this area.
While advance directives are encouraged for adults and legal once finalized, they are not required for pediatric patients, since parents or guardians are the decision-makers. Nonetheless, discussions about end-of-life decisions are most effective when a chronic illness is recognized, giving parents time to consider their options more thoughtfully.
Mullaney said that, in her palliative care role at Children's Memorial Hospital, Chicago, she strives to give parents empowerment. "I try to frame it to parents that it's not that they will be doing nothing, but more that they are protecting their child from invasive treatments they do not want to happen," she said. "For example, a lot of people decide if their child is going to die at home, then they don't want the invasion of EMTs coming in; they don't want a breathing tube."
Sean O'Mahony, MD, director of palliative care at Rush University Medical Center, Chicago, said the close relationships nurses develop with patients often are the foundation for these discussions. "They are quite familiar with aspects of family dynamic that might not come to other members of the healthcare team," O'Mahony said.
He recommended using open-ended questions to ask about families' emotional reactions to what is going on and to allow family time to respond.
Ties with other members of the healthcare team should also be considered, said Jo Ellen Rust, MSN, RN, CNS, clinical nurse specialist for children with complex care needs at Riley Hospital for Children, Indianapolis. "When we switch to palliative care, families may feel primary caregivers are pulling away, and that can be hurtful for them," she said.
Timing Different for Each Family
If transitioning to a new level of care is gradual, then, ideally, end-of-life conversations should also be gradual, O'Mahony said.
"The trajectory of life-threatening illnesses in children is often more unpredictable as compared to adults," he said. "It's not unusual for children to have rapid periods of decline, but then they return to their previous condition."
With that in mind, he said, it is beneficial for clinicians to approach families about these decisions in advance. "It can be very hard for families to make those decisions in a crisis situation."
Gail Kellberg, MSN, CPNP, in pediatric oncology hematology at Loyola University Medical Center, Maywood, IL, said appropriate timing varies for each family. "We are constantly exploring when the appropriate time is. When we do our best, we have brought it up well in advance of it actually needing to be addressed."
Patient Involvement Varies
In addition to timing, patient involvement is also different with each case. Depending on their age and maturity, pediatric patients sometimes take part in discussions, Kellberg said, though for some families that's too difficult.
Maureen Hancock, MSN, RN, clinical director of the pediatric critical care center at Riley Hospital, said, "[Often] children will talk to a nurse, doctor or caregiver and ask questions or state what they want, which gives caregivers an opportunity to talk to the guardian or parents about it."
Kellberg said some parents struggle with that inclusion. "Some will never address end-of-life issues as the child is dying. They want to shield the child from the process," she said, adding that a common sentiment among many parents is that, even when their child is dying, they still want all treatment options to be applied.
To help sort out the dialogue, Rust said an ethics tool, "The Four-Box Method," is useful. It centers on the patient's condition, family values, concerns for quality of life and expectations. It first focuses on the clinical diagnosis, morbidities and complications, and asks what is the goal of intervention, according to Rust. "Then there is the quality of life section, in which we ask what that means to the child and family," she said. "What are their priorities?" And finally, the contextual factors, economic and legal, are factored into how the child's care is proceeding.
Painful Time Has No Protocol
But even with a plan to facilitate productive conversations, every family - and relationship - is unique, Hancock emphasized.
"The plan of care, decision-making, patient comfort and emotional needs are broader nursing issues to address; but a unique approach is necessary with each patient, each family."
Mullaney said even after conversations and decisions have been made, families still need support. "That moment of having to sign the papers is most difficult. The most painful time is to put pen to paper and write their child's name and date of birth - that's the most difficult."
Romi Herron is a frequent contributor to ADVANCE.