Working with Families Perceived as Difficult

Résumé de l'auteur

In 2009, there were 6.4 million hospital stays for patients aged younger than 17 years, accounting for 17% of all US hospital inpatient care. The average length of stay was 3.8 days. An estimated 150,000 to 200,000 of these children require pediatric intensive care units (PICU) due to the severity of their illness. Research has shown that the PICU experience is not only stressful for children but also their families. Mothers have been noted to perceive their family functioning as dysfunctional even up to 6 months after discharge from a hospital.2 In a study of parents whose children recently had received a cancer diagnosis, 40% of fathers and more than 50% of mothers met criteria for acute stress disorder.

In addition, fathers and mothers have been found to have poor concordance in assessing their seriously ill child’s psychosocial health, emotional function, communication, and cognitive fatigue. This difference can lead to family discord. A combination of these factors may account for frustration and anger toward each other and hospital staff. It has been noted that 68% of nurses have been verbally abused by a patient’s family member. Even when relationships are challenging, pediatric health care providers must work with families to ensure high-quality care to their children.

Another contributing factor to tension in the PICU is that the multidisciplinary team approach to inpatient pediatric medical care is often characterized by tight schedules, rotating team membership, and a range of departmental and institutional politics that can blur professional boundaries and impact care. Lack of communication between care team members about patients can hamper collaboration and even lead to inadequate pain management.

Natalie is an 11-year-old female with a medical history of poorly controlled asthma who had an asthma attack that led to a subsequent acute cardiac arrest at home. She was transferred to a tertiary hospital PICU from a rehabilitation facility several months after her cardiac arrest, for management of severe dysautonomia, or “storming,” and a persistent vegetative state.

The patient’s family members, who were not fluent in English, included her mother and two aunts who provided Natalie with constant bedside attendance. They quickly began to voice anger at and distrust of Natalie’s medical team due to the rotating schedules of the PICU staff and subspecialists. Simultaneously, PICU staff expressed their frustration to each other at what they considered the family’s willful refusal to accept Natalie’s prognosis, as well as what was perceived as the family’s insistence on a miracle.

Whenever Natalie’s symptoms escalated, family members would often become agitated. Their expressions of anger reduced several staff to tears; some even declined to be part of Natalie’s care team. Morning bedside rounds were often disrupted by family members’ hostile and denigrating comments that heightened tension among house staff as Natalie’s potential for meaningful recovery was limited and her storming seemed to be uncontrollable.

Natalie’s mother identified a few nurses whom she felt were “on our side” because they had allowed the family to adjust cooling blanket equipment and place an additional cot near Natalie’s bedside. Staff members who attempted to reset limits because of safety concerns were labeled by the family as “no good.” One morning during rounds, Natalie’s family demanded the patient be transferred after they had heard the term “persistent vegetative state” used by the team to describe Natalie’s condition; they declared that the patient’s care team could not treat her if they believed she was “a vegetable.” A team meeting was held to discuss the case.

It is helpful for members of PICU care teams to meet and review a patient’s case in order to discuss issues that commonly…

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