We don’t learn everything we should when we are training as a healthcare professional. This is not likely a fault of the trainers, professors, and mentors we engage with, but it is more a function of HOW would you teach that? The that I am referring to in this instance is delivery of news/results/information that is unpleasant, or downright bad. Tragic. Despondence inducing.
How do you practice that? As a now faculty member, I employ simulation lab time to actually simulate real situations so students can practice in a low stakes setting. It is lower stakes for them, as well as potential patients and family members. Students and trainees can develop skills and language to care for patients in a variety of settings before embarking on the real journey with real outcomes. Practicing delivery of bad news can in no way replicate the actual scenario of sitting in the “Quiet Room” (as it was aptly called in my first Pediatric ICU job) across from a family member or loved one staring into their eyes as they wait, desperate for news.
Before I launch into my own story of how I realized how ill prepared I was, I considered potential barriers to quality communication (especially bad news) with patients and families. Likely most would cite language barrier as a hurdle. This may be actual language, in that you and your patient or family do not speak the same language or dialect, and you must employ a translator, either live or virtual. It is not best practice to use a family member as a translator, as not only can the “telephone game” tend to occur, but the family member is invested in the details as well, and they may not provide the best concrete transfer of information. In large clinics and hospitals, we often have staff who speak primary languages of the region and can provide translations services. If that is not feasible, we rely on an iPad with a distant talking head who is versed in medical terminology in the specified language. What they are not versed in, however, is patient care and intimate involvement with the news being delivered.
Another barrier is class or cultural differences between provider and recipient of the information. Traditional medicine depicted a white physician, typically male, in a white coat giving news with perfunctory details and perhaps accessorized only with a caring hand on a shoulder. The exchange ended with “Any questions?”, to which a dazed and confused patient or spouse could only mumble “uhhh no, not right now”. How would a patient or family who is primarily wondering how they will even pay for this entire encounter going to respond to someone who is perceived to be “above” them in education and social class? Did they feel heard? Did anyone confirm they understood the information given? Did they feel looked down upon? This is not to say that practitioners of medicine and nursing cannot collaborate and share information with persons of all backgrounds, but racial and socioeconomic differences exist, and we would be foolish to assume it doesn’t matter when we care for patients.
What about neurodiverse providers sharing information with neurotypical patients and families? If eye contact or reading social cues is a challenge for a provider, it should be part of their training to seek improvement in those skills. Anyone who has received news from a provider who did not seem to “read the room” or display appropriate empathy may attest to how much more devastating the bad news may have appeared in that lens. Likewise, speaking to a neurodiverse patient or family may leave a provider wondering "Did they not get what I said? They didn’t even react at all!” Understanding how people receive information is crucial to developing a relationship, even short term, as we discuss news and treatment options. I don’t see it being employed enough, either in training or on practice. I have read that many medical schools are incorporating empathy training and lectures in their curriculum, but that doesn’t mean it is seeping into practice of providers. In advanced practice nurse education, we discuss psychosocial aspects of care substantially, but how to we train to deliver bad news? We don’t.
Here is my story when the lightbulb went off that I was ill-prepared to do this well. I was working part-time in a privately owned primary care clinic whose patient population mirrored the neighboring area. Most were privately insured and lived and worked nearby. Many were Spanish-speaking, and we had several medical assistants and nurses who spoke Spanish and provided help when my language skills were insufficient (often). One morning, a mother brought in her school-aged daughter for complaints of being tired and bruising more often lately. My alarm bells rang slightly, as I picked up the chart to review her history. No recent medical problems, no fevers, no known exposures. I examined her and agreed yes, some unexplained bruising, even for an active elementary schooler. As it was near the weekend, I ordered a stat CBC to look at her lab values and ease both my and the mother’s minds that this may be lingering viral illness or some other innocuous diagnosis.
Here's where I realized NO ONE TAUGHT ME THIS. A few hours after the patient and her mom left my office to get her lab work done, the office nurse (who was new to the practice and didn’t know me very well) handed me the printout of her CBC results from the lab. I scanned in quickly, and my stomach lurched. I stormed to the back of the clinic where (I hoped) there were no patients in earshot and yelled NOT as quietly as I should have “F*$K!” The (new) nurse stared at me wide eyed and silent. I said “No, no... it’s not you. This is awful, and we need to call the mom back and have her come in. I can’t say this on the phone.”
The nurse phoned the mom and was cagey when the mother asked what was going on that warranted a return in-person trip. “I think Flippo just wanted to speak to you about what to do – you don’t have to bring your daughter back with you” is all she said. Within the hour, the nurse came to me and said “I put her in room 4. She is there by herself”.
At this information, I literally straightened my lab coat (I have since eschewed wearing one – it’s a fomite, as well as just not as people-friendly), took a deep breath, exhaled, and reminded myself silently “this day will be life changing for this family and I need it to be done as best as I can. How on earth will I say this?” I was desperately trying to remember when I had been mentored in this type of encounter before as an NP and how to do this. Nothing. I hadn’t ever practiced this as the sole provider. I could only recall as a PICU nurse being asked to sit with a family when the ICU physician delivered the tragic news of the brain death of their daughter, my patient. It was brutal, but my physician mentor handled it with skill and empathy. That was all I had to draw from.
I opened the door and sat in a chair across from the mother. We had met before this appointment, but she didn’t know me well. “Hi. Thank you for coming back in, and I apologize for the inconvenience today. I have concerns about your daughter’s blood work associated with what you told me his morning. Two of her three cell lines are dangerously low.” I held out the paper with results on it to show her.
“Her white blood cell count and her platelets are well below what they should be. Her red blood cell count is borderline as well.”
The mother’s eyes shifted anxiously as she looked from the results on the paper to me and back again.
“Okay,” she said. “What does this mean?”
I swallowed hard. I had to say it. I believe in honesty and overestimating my concerns. That way, if it is less serious that I feared, we could all breathe relief, but if my fears were true, I hadn’t given false hope (someone did teach me this). “I am worried she has cancer. Leukemia. I need you to take her to the emergency room at the children’s hospital for further work up. She will be admitted to the hospital and see specialists who will help us figure out what is going on.”
That was all I said, because that’s all I knew at that point. I looked at the mother’s face. I scooted closer to her in my rolling chair. “I know what I am saying sounds terrifying. Quite honestly, I am scared, too. But I know the doctors there will help your sweet girl, and we will move forward. Tell me what you’re thinking right now?” It was mostly an invitation, because I really wanted to know. I had no idea how she was metabolizing this information.
“Okay. I will go home and get her and my husband,” she said matter-of-factly. She confirmed location and whom they should speak with when they got to the hospital, and I stood to leave.
She stood as well, and I gave her a side hug in empathy. I feel it’s easier for women to hug women in these kinds of situations, as it’s usually seen as non-threatening and a “mom-to-mom” type of sharing. She reached her other arm around me, and I felt her sobs as she started to cry quietly.
“Let’s get some answers, okay? Then we can work through whatever is going on,” I offered. To me, it seemed like I was giving gross platitudes that had no teeth at all. What was the right thing to say?
“Ok,” she said, and picked up her bag. “I will get her there as soon as I can get home and gather our stuff.”
I opened the door for her and said I would check back in a few hours with the hospital. I made sure I had the family’s contact information, as I could never go the whole weekend without checking in. Despite my lack of formal preparation for these moments, I knew that sending a cancer diagnosis-laden family to a hospital with zero follow up from their primary care provider was poor practice.
Later that evening, after I ruminated over how I handled the delivery of the news, I drove over to the hospital to walk through the emergency department to find my sweet patient and her family. They were in the middle of their work up and had already talked to the pediatric oncologists, who had nearly confirmed that yes, it was acute lymphocytic leukemia. The family seemed more ease with the immediate treatment plans than I had guessed they would be, and I was glad I had told them in my office about my presumptive diagnosis.
This event happened in my practice almost a decade ago, and I still think about it when I am teaching my students or wondering how I can do better, and be better. I had no hurdles that I mentioned earlier to negotiate when giving this family bad news. We all spoke the same language, we had similar socio-economic backgrounds, and we were all neurotypical in our dealings with others. AND IT WAS SO HARD. I can’t imagine the difficulty for any encounters with additional challenges.
We need to do better in our development of empathy training and interpersonal communication for healthcare providers. This starts with first responders and continues all the way to those who pronounce death. I think about my experiences as a patient and how providers could do better, but maybe no one told them that their interactions weren’t stellar? Don’t use a collective “we”, as it’s demeaning and infantilizing (as in “are we taking our blood pressure medicine as prescribed?). Body language is paramount in establishing a rapport. Ditch the hierarchy-maintaining white coat. Be human.
I am working on my syllabus right now. I'll be better.
