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Robin Steinhorn in the NICU

Coming together as a team for the good of the baby

Robin Steinhorn in the NICU

Children’s National has a new program to care for children who have severe bronchopulmonary dysplasia, a serious complication of preterm birth.

Around the 1-year-old’s crib is a tight circle of smiling adults, and at the foot of his bed is a menagerie of plush animals, each a different color and texture and shape to spark his curiosity and sharpen his intellect.

Gone are the days a newborn with extremely complex medical needs like Elijah would transfer from the neonatal intensive care unit (NICU) to the pediatric intensive care unit and transition through a couple of other hospital units by the time he was discharged. Gone are the days when he’d see a variety of new physician faces at every stop. And gone are the days he’d be confined to his room, divorced from the sights and sounds and scents of the outside world, stimulation that helps little baby’s neural networks grow stronger.

Children’s National has a new program designed to meet the unique needs of children like Elijah who have severe bronchopulmonary dysplasia (BPD), a common complication of preterm birth.

“It’s more forward-thinking – and I mean thinking for the future of each individual baby, and it’s allowing the baby to have one team and one location to take advantage of a deep knowledge of and relationship with that baby and family,” says Robin Steinhorn, M.D. Dr. Steinhorn is senior vice president of the Center for Hospital-Based Specialties and one of Children’s multidisciplinary team members who visited Elijah’s bed twice weekly during his lengthy hospitalization and who continues to see him regularly during outpatient visits.

“The pulmonologist, the neonatologist, the respiratory therapist, the physical therapist, the dietitian, the cardiologist – we all come as a team to work together for the good of the baby,” Dr. Steinhorn adds. “We stick with these babies through thick and thin. We will stick with that baby with this team and this location until they are ready to go home – and beyond.”

BPD, a serious lung condition, mostly affects extremely low birthweight preterm babies whose lungs were designed to continue developing inside the womb until the pregnancy reaches full term. Often born months before their due dates, these extremely vulnerable newborns have immature organs, including the lungs, which are not ready for the task of breathing air. Children’s program targets infants who experience respiratory failure from BPD. The respiratory support required for these infants ranges from oxygen delivered through a nasal cannula to mechanical ventilators.

Robin Steinhorn and Colleague

“It’s more forward-thinking – and I mean thinking for the future of each individual baby, and it’s allowing the baby to have one team and one location to take advantage of a deep knowledge of and relationship with that baby and family,” says Robin Steinhorn, M.D.

About 1 percent of all preterm births are extremely low birthweight, or less than 1,500 grams. Within that group, up to 40 percent will develop BPD. While they represent a small percentage of overall births, these very sick babies need comprehensive, focused care for the first few years of their lives. And some infants with severe BPD also have pulmonary hypertension which, at Children’s National, is co-managed by cardiology and pulmonary specialists.

Children’s BPD team not only focuses on the child’s survival and medical care, they focus on the neurodevelopmental and social care that a baby needs to thrive. From enhanced nutrition to occupational and physical therapy to a regular sleep cycle, the goal is to help these babies achieve their full potential.

“These babies are at tremendous risk for long-term developmental issues. Everything we do is geared to alleviate that,” adds John T. Berger III, M.D., director of Children’s Pulmonary Hypertension Program.

“Our NICU care is more focused, comprehensive and consistent,” agrees Mariam Said, M.D., a neonatologist on the team. “We’re also optimizing the timing of care and diagnostic testing that will directly impact health outcomes.”

Leaving no detail overlooked, the team also ensures that infants have age-appropriate developmental stimuli, like toys, and push for early mobility by getting children up and out of bed and into a chair or riding in a wagon.

“The standard approach is to keep the baby in a room with limited physical or occupational therapy and a lack of appropriate stimulation,” says Geovanny Perez, M.D., a pulmonologist on the team. “A normal baby interacts with their environment inside the home and outside the home. We aim to mimic that within the hospital environment.”

Dr. Steinhorn, who had long dreamed of creating this comprehensive team care approach adds that “it’s been so gratifying to see it adopted and embraced so quickly by Children’s NICU caregivers.”

Tessie October

Effectively expressing empathy to improve ICU care

Tessie October

“Families who feel we’re really listening and care about what they have to say are more likely to feel comfortable as they put their child’s life in our hands a second, third or fourth time,” says Tessie W. October, M.D., M.P.H.

In nearly every intensive care unit (ICU) at every pediatric hospital across the country, physicians hold numerous care conferences with patients’ family members daily. Due to the challenging nature of many these conversations – covering anything from unexpected changes to care plans for critically ill children to whether it’s time to consider withdrawing life support – these talks tend to be highly emotional.

That’s why physician empathy is especially important, says Tessie W. October, M.D., M.P.H., critical care specialist at Children’s National Health System.

Several studies have shown that when families believe that physicians hear, understand or share patients’ or their family’s emotions, patients can achieve better outcomes, Dr. October explains. When families feel like their physicians are truly empathetic, she adds, they’re more likely to share information that’s crucial to providing the best care.

“For the most part, our families do not make one-time visits. They return multiple times because their children are chronically ill,” Dr. October says. “Families who feel we’re really listening and care about what they have to say are more likely to feel comfortable as they put their child’s life in our hands a second, third or fourth time. They’re also less likely to regret decisions made in the hospital, which makes them less likely to experience long-term psychosocial outcomes like depression and anxiety.”

What’s the best way for physicians to show empathy? Dr. October and a multi-institutional research team set out to answer this question in a study published online in JAMA Network Open on July 6, 2018.

With families’ consent, the researchers recorded 68 care conferences that took place at Children’s pediatric ICU (PICU) between Jan. 3, 2013, to Jan. 5, 2017. These conversations were led by 30 physicians specializing in critical care, hematology/oncology and other areas and included 179 family members, including parents.

During these conferences, the most common decision discussed was tracheostomy placement – a surgical procedure that makes an opening in the neck to support breathing – followed by the family’s goals, other surgical procedures or medical treatment. Twenty-two percent of patients whose care was discussed during these conferences died during their hospitalization, highlighting the gravity of many of these talks.

Dr. October and colleagues analyzed each conversation, counting how often the physicians noticed opportunities for empathy and how they made empathetic statements. The researchers were particularly interested in whether empathetic statements were “buried,” which means they were:

  • Followed immediately by medical jargon
  • Followed by a statement beginning with the word “but” that included more factual information or
  • Followed by a second physician interrupting with more medical data.

That compares with “unburied” empathy, which was followed only by a pause that provided the family an opportunity to respond. The research team examined what happened after each type of empathetic comment.

The researchers found that physicians recognized families’ emotional cues 74 percent of the time and made 364 empathetic statements. About 39 percent of these statements were buried. In most of these instances, says Dr. October, the study’s lead author, the buried empathy either stopped the conversation or led to family members responding with a lack of emotion themselves.

After the nearly 62 percent of empathetic statements that were unburied, families tended to answer in ways that revealed their hopes and dreams for the patient, expressed gratitude, agreed with care advice or expressed mourning—information that deepened the conversation and often offered critical information for making shared decisions about a patient’s care.

Physicians missed about 26 percent of opportunities for empathy. This and striving to make more unburied empathetic statements are areas ripe for improvement, Dr. October says.

That’s why she and colleagues are leading efforts to help physicians learn to communicate better at Children’s National. To express empathy more effectively, Dr. October recommends:

  • Slow down and be in the moment. Pay close attention to what patients are saying so you don’t miss their emotional cues and opportunities for empathy.
  • Remember the “NURSE” mnemonic. Empathetic statements should Name the emotion, show Understanding, show Respect, give Support or Explore emotions.
  • Avoid using the word “but” as a transition. When you follow an empathetic statement with “but,” Dr. October says, it cancels out what you said earlier.
  • Don’t be afraid to invite strong emotions. Although it seems counterintuitive, Dr. October says helping patients express strong feelings can help process emotions that are important for decision-making.

In addition to Dr. October, study co-authors include Zoelle B. Dizon, BA, Children’s National; Robert M. Arnold, M.D., University of Pittsburgh Medical Center; and Senior Author, Abby R. Rosenberg, M.D., MS, University of Washington School of Medicine.

Research covered in this story was supported by the National Institutes of Health under grants 5K12HD047349-08 and 1K23HD080902 and the National Center for Advancing Translational Sciences under Clinical and Translational Science Institute at Children’s National Health System grant number UL1TR0001876.

Patient-centered family conferences can boost satisfaction with care

Malone Brand Shoot January 2015 CICU Cardio Patient Baby Boy African American Dailen Miles Staff
The medical team typically speaks for nearly three-quarters of the time allotted to family conferences in the pediatric intensive care unit (PICU). Clinicians can transform those one-sided conversations into patient-centered interactions by ensuring that they show empathy, ask questions, and speak from the heart as well as from their clinical experience, according to a cross-sectional study published June 17 by Pediatric Critical Care Medicine.

A research team led by Tessie W. October, MD, MPH, a critical care specialist at Children’s National Health System, sought to clarify the association between the patient-centered nature of physicians’ communication patterns and the degree to which parents were satisfied with decision-making during family conferences in the PICU. In order to dissect the dynamics of those conversations, the team recorded 39 family conferences, which averaged 45 minutes in length. The medical team spoke 73 percent of the time. Physicians contributed 89 percent of the dialogue and spent 79 percent of their time speaking about medically focused topics. Parents’ contribution amounted to 27 percent of the conversation, according to the study, “Parent Satisfaction With Communication is Associated With Physician’s Patient-Centered Communication Patterns During Family Conferences.”

“These conferences cover some of the toughest decisions that families of critically ill children will ever make: Whether to start life support, place a tracheostomy, repeat bone marrow transplantation, or to withdraw life-sustaining interventions,” Dr. October says. “Rather than essential decisions about the child’s care being made in partnership with families, the conferences are akin to monologues with the medical team deciding the pace and content of the conversation.”

A few subtle changes can shift more of the balance of the conversation to the parents and, when clinicians use these skills, parents are more satisfied with the decision-making, she says. Simple changes include maintaining eye contact, smiling when appropriate, and acknowledging the parents’ emotions by saying “I can’t imagine how difficult this must be for you” or “I wish I had better news” ­–  rather than simply informing the parents of the child’s prognosis. When these social niceties are skipped, parents can perceive their medical team to be uncaring, she says. Slowing the pace of the conversation is helpful, as are including open-ended questions and moments of silence, which both tease out opportunities for parents and family members to offer their thoughts.

“There is an art to it,” October says. “From the outset, clinicians can ask about the family’s understanding of their child’s medical condition and follow up with questions about their family’s goals, such as ‘What does a meaningful life look like? Has anyone ever spoken with you about that?’ ”

The parents who were involved in the study completed satisfaction surveys within 24 hours of the family conference. “The median parent satisfaction score was significantly higher (82.5) when the patient-centeredness score was greater than or equal to 0.75, compared to a median satisfaction score of 70.0 when the patient-centeredness score was less than 0.75,” October and co-authors write.

“We do not know the optimal balance of discussing psychosocial elements compared to medical talk, but our results reveal that the amount of psychosocial elements does impact[the degree of parent satisfaction with communication. It is clear that parents want their fears and concerns to be understood and addressed, and they want to feel cared for and about. Making our interactions with parents more patient-centered can likely improve the communication experience for parents and also improve the grieving process should their child not survive their illness,” the authors continue.

In the next phase of research, the team will explore how parents’ perceptions change when additional members of the medical team speak during family conferences. In the current study, case managers and bedside nurses each spoke 2 percent of the time while social workers spoke 7 percent of the time.

Related Resources: Patient centered family conferences can boost satisfaction with pediatric ICU care

Patient centered family conferences can boost satisfaction with pediatric ICU care

What’s Known
Family conferences in the pediatric intensive care unit (PICU) cover difficult decisions made on behalf of critically ill children, such as starting or withdrawing life support, placing a tracheostomy, or repeating bone marrow transplantation. Family satisfaction is a national quality indicator for determining excellence of care, and families rate communication as one of physicians’ most important skills. Researchers sought to clarify the association between the patient-centered nature of physicians’ communication patterns and the degree to which parents were satisfied with decision making during family conferences in the PICU.

What’s New
A research team led by Children’s National Health System staff recorded 39 family conferences to dissect the dynamics of the conversations. The conferences averaged 45 minutes in length, and the medical team spoke 73 percent of the time. Physicians contributed 89 percent of the dialogue; bedside nurses spoke 2 percent of the conversation. The team used the Roter Interaction Analysis System and a related patient-centeredness score to evaluate the conversations. A patient centeredness score higher than 0.75 predicted parental satisfaction, controlling for the length of the conference, the severity of the child’s illness, race, and socioeconomic status.

Skills: Partnering and activation, asking for patient opinion, asking for understanding

  • Doctor: What do you think would help?
  • Doctor: Do you follow me?
  • Doctor: Let me make sure I’ve got what you meant. Your preference would be to place the trachif we can’t get the breathing tube out on this third try?

Questions for Future Research
Q:
How do parents’ perceptions change when additional members of the medical team speak during family conferences?
Q: How does the manner in which parents process information, e.g., cognitive processing vs. psychomotor processing, impact their preference for more patient-centered family conferences?

Source: Parent Satisfaction With Communication is Associated With Physician’s Patient-Centered Communication Patterns During Family Conferences.” T.W. October,P.S. Hinds, J. Wang , Z.B. Dizon, Y.I. Cheng, and D.L. Roter. Published by Pediatric Critical Care Medicine June 17, 2016.