“But if thought corrupts language, language can also corrupt thought.”
– George Orwell

The “difficult” family

At 2 a.m., on my first night shift as a pediatric resident, a patient, Casey, transferred from another hospital. She had a rare, progressive chronic illness, was medically complex, and was currently receiving treatment for an acute systemic infection. Shortly after she arrived, she became difficult to arouse. When I asked her mother questions, I was met with one-word answers and frustration that I did not know more about her. Her mother declined actions she saw as harmful, such as placement of new lines. She declined to meet with the clinicians from the intensive care unit (ICU). She insisted on speaking with the team from the previous hospital.

The difficult handoff

A year later, Casey had not left the hospital. Now starting an ICU rotation, I resumed caring for her again. When receiving handoff, I was informed that Casey’s prognosis was poor, and yet, her “difficult” family was requesting “everything” be done. After an incident where Casey’s mother declined testing she did not want for Casey, her response was perceived as “threatening and aggressive,” adjectives that continued to be used to describe her. The family had a long-standing relationship with the security team, and had interacted with law enforcement multiple times during the hospitalization.

The difficult goodbye

The last day I spent with Casey and her family started out like those before it. She was our sickest patient in the ICU. Rounds were tense, and conversations felt insurmountably unfocused. Casey required escalating doses of vasopressors. This time, her clinical status declined beyond recovery. Clinicians rapidly gathered at her bedside to resuscitate her as her heart rhythm deteriorated into ventricular fibrillation. After years of watching the monitors, her parents understood their daughter was dying. Watching calmly as commotion filled the room, they quietly requested we shift the focus to prioritizing their daughter’s comfort.

After her heart stopped, Casey was compassionately extubated. One by one, each strand in the web of equipment that had supported her life was removed. As her parents lovingly bathed her body, I reflected on the unimaginable loss of their daughter, paired with the simultaneous relief from the team and system upon which they had been forced to depend.

The difficult reflection

I thought back to my first handoff about Casey, where I colored my co-residents’ views of the family before they even met them. I imagined the critical care team’s parallel handoff to their colleagues, after being immediately kicked out of the room. I thought about how many handoffs had happened since then.

A good friend uses the phrase “maybe life is happening” when she catches herself making judgments about another person. Casey’s family was away from home, missing their community. They spent the better part of several years in the hospital. They had limited financial and social resources, and needs at home they were unable to address. Their views on health and disease differed from those of most of our clinical team. Stemming from personal and historical racial tensions, they had limited trust in the medical system.

As Casey got sicker, we continued to hand off that her family was “difficult,” but fewer and fewer clinicians knew that Casey had an infectious giggle, or that she loved the pop music. We labeled Casey’s mother as “aggressive” and “threatening.” If we reflected on the meaning and impact of our words, would we have chosen more accurate and ore family-centered language? If we listened to and shared her family’s stories and goals, would we be less quick to utilize security and law enforcement when communication became challenging?

The difficult health care team

“Difficult” patients and families are those that raise negative emotions in clinicians. 15 to 60 percent of patients are labeled “difficult,” and they experience worse outcomes, including patient-described poor communication, patient dissatisfaction, high resource utilization, and uncontrolled symptoms.

Casey’s family had attributes of those we label as “difficult” – families with unique perspectives, from under-represented backgrounds, and who serve as strong vocal advocates for their children. Much of the literature on “difficult” patients defines family-specific factors and offers strategies for addressing or overcoming these. Yet, we know that physician biases — implicit and explicit — impact patient outcomes and interactions. Physicians who are more likely to perceive patients as “difficult” are more likely to score lower on empathy scales, work more hours per week, perceive more stress, be younger and less experienced, and suffer from depression and anxiety. As a young resident physician when I cared for Casey, these data resonate with me.

We sometimes arrive at conclusions about patients and families that may not be truthful or justifiable. Our prejudices are handed off to colleagues, especially in hospital medicine, with frequent transfers of care of complicated patients. Resulting negative interactions may condition families to distrust the team. Patients and families might then behave in ways that we interpret as confirming our prejudices. The power of language during handoffs, paired with lack of training for clinicians in communicating social and emotional complexities, can lead to the perpetuation of biases and stigmas that are nearly impossible for families to overcome.

The difficult solutions

“Maybe life is happening” triggers introspection and empathy – looking inwards at one’s prejudices and biases, and outwards to the perspectives of families. If we find ourselves describing a family as “difficult,” considering that maybe life is happening can help us pause to identify unmet needs and listen to untold stories.

Our language has power. This power can be harnessed in positive ways to provide and communicate compassionate care across a health care team. I focus here on the individual’s role, recognizing the systemic issues that demand attention from clinicians and leaders to dismantle harmful systems, identify structural vulnerabilities, mitigate existing harms to families, and support clinical teams to recognize and combat biases and prejudices. As we work towards creating this environment, when I find myself making an unfounded judgment or drawing a premature conclusion, Casey’s story reminds me that maybe life is happening. Which is a start.

Aleks Olszewski is a pediatrics bioethics fellow and can be reached on Twitter @aleksolszewski.

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