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Mother receives bad news from pediatrician

All in the family: How to run an effective family meeting

Mother receives bad news from pediatrician

Tessie October, M.D., M.P.H., led a qualitative study that discovered an increase in important information shared from families to the physician when physicians had openly responded with empathy and made time for families to share.

When critically ill children are in the intensive care unit (ICU), physicians must often lead difficult discussions with their families about the direction of care. These family conferences can be challenging for both the doctors leading them and for the families, who are unsure of their options, are under emotional strain and who may feel pressured to make decisions.

“We have patients with serious illnesses discussing major decisions and we don’t do a great job thinking about how to structure those meetings,” says Tessie October, M.D., M.P.H., a critical care specialist at Children’s National Hospital.

Dr. October seeks to help doctors better bridge the gap between themselves and families with her presentation entitled “All in the family: How to run an effective family meeting,” which she presented during the American Academy of Pediatrics (AAP) National Conference and Exhibition in New Orleans on October 28th.

During her session, Dr. October role-played a family conference scenario and allowed the audience to experience key skills needed to successfully facilitate them. “Many people think family conferences are about being nice and assume that physicians know how to do this well,” says October. “There is a skill to navigating the conversation where you ensure that the family hears what you’re saying and you respond to the emotions that follow.”

Dr. October led a qualitative study that discovered an increase in important information shared from families to the physician when physicians had openly responded with empathy and made time for families to share. “Families experience increased satisfaction, physicians become more confident in leading these family conferences and the time needed to make medical decisions is shortened because the family heard the information clearly enough for them to make the decision,” says Dr. October.

Within her study, the 68 recorded conferences that took place at Children’s National pediatric ICU (PICU) showed that physicians missed opportunities to respond to the emotions expressed by a patient’s family in 26% of their interactions. “Families want a doctor to be professional caregiver, to be honest with them, and to present clear information that allows the family to make an informed decision.”

Dr. October and her colleagues intend to help physicians learn to communicate better, starting at Children’s National. “My goal is to expand the program hospital-wide, starting with hematology, neonatology, emergency medicine and cardiology fellows, all of whom will most likely have these difficult treatment and end-of-life discussions with families at some point.”

PICU room

How to help bereaved families

PICU room

To help clinicians provide better care to families after children die, Tessie W. October, M.D., MPH, and colleagues recently published an article on this topic in a special supplement to Pediatric Critical Care Medicine on death and dying.

Death and dying are always difficult topics to discuss at hospitals. They’re especially hard conversations when they occur within pediatric intensive care units (PICUs), says Tessie W. October, M.D., MPH, a critical care specialist at Children’s National.

“It’s almost easier to pretend that children don’t die in the ICU. But they do,” Dr. October says.

Tragically, some children do die in ICUs. However, even when pediatric patients die, Dr. October adds, the pediatric care team’s relationship with the bereaved family continues. Knowing how to help vulnerable families during these trying times and ensuring they have needed resources can be critical to lessening the health and social consequences of grief. To help clinicians provide better care to families after children die, Dr. October and colleagues recently published an article on this topic in a special supplement to Pediatric Critical Care Medicine on death and dying.

The multi-institutional research team performed a narrative literature review for this budding field. They pored through more than 75 papers to better understand the health outcomes of parents whose child died within a PICU and the different ways that hospitals help families cope with these tragedies.

The researchers found a range of detrimental health outcomes, from a significantly increased risk of parental death in the aftermath of a child’s death to higher rates of myocardial infarction, cancer and multiple sclerosis. Bereaved parents used more health care resources themselves, took more sick days and had more sleep problems than parents who weren’t bereaved.

Likewise, parents whose child died were at a high risk of experiencing mental health conditions including complicated grief, anxiety, depression and posttraumatic stress disorder. Divorce was eight times higher among bereaved parents compared with the general population, and financial crises were common after voluntary or involuntary unemployment.

Knowing which risks parents could face can help the care team respond better if a child dies, Dr. October explains. Their review highlighted simple ways to support families in the immediate aftermath of a child’s death and beyond, such as:

  • Giving parents the opportunity to spend time alone with the child’s body
  • Allowing friends, family and others to visit at the parents’ discretion and
  • Providing easy access to professional support, such as chaplains, social workers and grief coordinators.

Even simple acts such as closing doors and blinds to provide privacy can be helpful, Dr. October says.

An ongoing relationship with health care providers is also important for helping parents grieve, she adds. Children’s National is among hospitals across the country to set up meetings for parents and other family members within weeks of a child’s death. This gives parents a chance to ask questions about what happened in the confusing blur of the PICU and to gather resources for themselves and surviving siblings. Children’s National also provides ongoing support through periodic calls, sending sympathy cards, attending funeral services and in a special annual memorial during which surviving family members release butterflies.

“Our role doesn’t end when a child dies,” Dr. October says. “To help parents through bereavement, we need to maintain that strong connection.”

Another way to help bereaved families is to make sure they have adequate information, she adds, particularly about the confusing subject of brain death. In a different study recently published in Chest Journal, Dr. October and Children’s colleagues sought to understand which information the public typically accesses about this topic.

The team searched Google and YouTube using “brain dead” and “brain death” as search terms. They evaluated the top 10 results on both sites, assessing the accuracy of information using 2010 guidelines released by the American Academy of Neurology. They also assessed the reading level of websites and evaluated comments about the YouTube videos for content accuracy and tone.

They found that there was inaccurate information on four of the 10 websites, six of the 10 videos and within 80 percent of the YouTube comments. Most of these inaccuracies dealt with using terms like brain death, coma and persistent vegetative state interchangeably. “These conditions are very different and affect how we treat patients,” Dr. October says.

The average reading level of the websites was 12th grade, far too sophisticated for much of the public to comprehend, she adds. And the majority of comments on the YouTube videos were negative, often disparaging clinicians and deriding organ donation.

“It’s really important for providers to recognize that this is an emotionally laden topic, and a lot of times, families come to us with information that’s not always true,” she says. “That’s why it’s especially important for the field to respond with empathy and care.”

In addition to Dr. October, co-authors of the Pediatric Critical Care Medicine study include Karen Dryden-Palmer, R.N., MSN, Ph.D., The Hospital for Sick Children; Beverley Copnell, Ph.D., BAppSc, R.N., Monash University; and Senior Author Kathleen L. Meert, M.D., FCCM, Children’s Hospital of Michigan. Dr. October’s co-authors for the Chest Journal article include Lead Author, Amy H. Jones, M.D., and co-author Zoelle B. Dizon, BA, both of Children’s National.

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