As a neonatologist, I can count on both hands the times I was, undoubtedly helpfully, informed during sign-out that this particular patient had a “difficult parent.” Undoubtedly helpfully, I like to think, because either the previous physician, or nurse, or secretary, or respiratory therapist had an encounter with the parent that somehow altered their expectation of what their workflow would be like that day. The deviation from what was expected was ultimately large enough to derail this person from their usual sequence of tasks, placing them in unfamiliar territory. Consequently, what is not familiar is uncomfortable, and what is uncomfortable causes tension. The ambushed staff member, having endured this “difficulty,” is now gracefully sharing their perception in hopes of saving you from the same “difficult” encounter. Sharing is caring, after all.
Or … is it? This seemingly benign gesture is problematic in several ways. The meaning of “difficult” is invariably subjective: what is difficult for me may not be difficult for you and vice versa. We have different skill sets, strengths, and weaknesses that make us more or less equipped to handle various types of situations. For the physician who perhaps is more time-constrained and prefers less patient interaction, it is possible that a parent who has many questions could be perceived as “difficult” or a nuisance. In contrast, for the physician for whom chatting with others is a perk of the job, an inquisitive parent could be perceived as “invested.”
Merriam-Webster defines “difficult” as that which “implies the presence of obstacles to be surmounted or puzzles to be resolved and suggests the need of skill or courage.” Thus, the parent appears to the clinician as problematic enough to require a skillful or courageous person to surmount the obstacle of their presence. Constituting a person as a “problem” prioritizes judgment above curiosity and removes the medical team’s ability to understand the parent, which inevitably destroys the ability to support the parent. This is like throwing a rock in a lake, sending out a ripple effect that breaks trust, communication, and shared decision-making between the parent and medical units.
The last time I was told by a nurse that the “difficult parents are here,” she followed the comment with an “I’m sorry.” Understanding the warning as protective, I rolled up my sleeves and braced for the worst, letting my imagination paint the picture of a dad who would get up from his chair and yell expletives in my face while the mom would stand by him, fuming, while the rest of the unit looked at me as I shriveled into my scrubs. I tied my hair up, straightened my back, and walked over.
Two of the calmest people I had ever seen were sitting quietly near their son’s isolette: the mom was cradling him in her arms, looking down at him through smiles and coos, and the dad was tenderly stroking his head. I greeted the parents, sat down, and provided some updates about their son. They thanked me for the detailed update and asked me a few well-thought out questions. I was able to answer most of them, but I did not have the answer to one of them. I acknowledged the uncertainty, shared my concern with them, and expressed that we were all anxious about finding the cause. Both the mom and dad nodded, and expressed their gratitude over their son’s care. I was baffled. Difficult? Why were these parents labeled “difficult”? It didn’t occur to me until I was driving home that perhaps “difficult” in this context was equated with the discomfort that accompanies uncertainty. And as uncertainty inherently cannot be solved, it is a perennial “problem.” As time had gone on, the staff subsequently avoided the parents more and more, which engendered ongoing misunderstanding and lack of trust between the family and the medical team.
Let’s examine a second case, from a few months earlier. I was called to the bedside after being told for many days that the parents of this infant had not been coming in to visit their baby. On a daily basis, the nurses would report in their updates with a bit of a scoff and an eye roll, “I haven’t seen mom. She’s only 19.” Nearly 10 days had passed and neither the physician, nurse, social worker, nor case manager had been able to reach the mother by phone. I was told that the case was difficult because this was a “young mom,” as if her age meant she was automatically self-centered and inconsiderate. Finally on the 11th day, the mother appeared at the bedside, and I was called to speak with her. She was young, but what I noticed first is how tired she appeared. I quietly pulled up a chair next to her. A silent tear slinked down her face. Before I was able to speak, she turned to me and said, “I am giving him up for adoption. That is his best chance.” I was later informed that this infant had not been conceived willingly, and the mother had been recovering from substantial trauma. I asked to arrange a family meeting with the medical team, not just to help provide the social support this mother desperately needed, but also to bring the care team in alignment with the mother’s narrative. Like the “difficult parents” who were simply seeking to understand their infant’s prognosis, this “young mom” was also trying to do what was best for her infant.
I recently did have an experience with a parent that one could more objectively describe as “difficult.” I was prepared for it, as I could sense escalating tension with the mother every time I provided her with clinical updates on her son over the phone. As I walked into the unit on the morning of my shift, I was told that the mother had “fired” her son’s bedside nurse, the charge nurse, and the overnight physician (who is the only physician available during the night). She was upset that her son had had a “spell” and now had to stay an additional three days for monitoring, when the previous physician had told her that her son could go home today.
In response, I called the social worker and asked if she could arrange for a family meeting with the parent, so we could comfortably discuss the mother’s concerns. The social worker returned to my office and stated that the mother had refused the meeting, telling her she would not leave her son’s bedside and that anything we needed to discuss could be discussed out in the open in the unit. At this point, I sighed and braced myself. We rounded on this patient last, so I could offer the mother however much time she needed.
At first, the conversation did not go well. I went over the improvements her son had made, and then moved on to the reason he could not be discharged. At this, the mother’s face turned a dark-beet shade of red. She burst out, “This does not make ANY SENSE! I was told one thing, now YOU are telling me another … I don’t trust you! I don’t trust anyone on this unit to take care of MY SON!” The verbal cascade continued; I did not want to interrupt, as often important pieces of information come out in heated moments like these.
After nearly 45 minutes, the mother was calm. Her frustration was with the conflicting information and communication she was receiving with regards to her son’s clinical status and consequent management. In all honesty, what parent would NOT be upset in this context? I apologized on behalf of the medical team and let her know I would personally and exclusively be the one that provided clinical status updates and management decisions to avoid miscommunication. Her son was discharged the following day, in the arms of a smiling mother. She returned to the unit two weeks later to thank us for our “amazing care” and “smooth clinical course.”
Even with this most recent case, I think it is the situation that is difficult, not necessarily the parent. A more robust description of the mother’s state of mind perhaps could be “frustrated with the incongruent communication she is receiving from the medical staff, and feeling uncertain of what she can understand and trust is being told to her.” In other words, in the context of incongruence and uncertainty, it is a normal reaction to feel upset and disheartened. Being labeled as “difficult” carries the implication that the person’s reaction is disproportionate to the situation at hand — when in fact perhaps the opposite is true.
In the fast-paced world that is medicine, in one of the fastest-paced countries, making judgments about people is often viewed as synonymous with being efficient and smart. Judgment is a skill that is valued and refined in medical school, as students learn to discern compliant from not compliant, appropriately-dressed from disheveled, “sick” or “not sick.” While being discerning in this manner is obviously something we should endorse as physicians, I would advocate that we simultaneously remain vigilant of the stereotypes and connotations that accompany our judgments. In particular, the word “difficult” should be abandoned, as it rarely captures the whole picture and it stands in the way of establishing a trusting relationship with patients/parents.
What word or phrase in medicine do you think carries excessive judgment? Share in the comments!
Dr. Giulia Faison is a neonatologist and budding bioethicist in Southern California. She enjoys yoga, running, and recently has picked up surfing. As a mom of four, exposing her children to the world is a priority. Dr. Faison is a 2023–2024 Doximity Op-Med Fellow.
Illustration by Jennifer Bogartz
