Communicating Bad News Across Cultures
By Gina Shaw
March 19, 2020
Article In Brief
Neurologists discuss the challenges and offer suggestions for communicating difficult news about diagnoses with patients and families across different races, ethnicities, and cultures.
Julia Durrant, MD, will never forget a patient she cared for several years ago, who was brought to the neurocritical care service at Oregon Health & Science University (OHSU) after experiencing a devastating head bleed. “We knew from the very beginning that this was an event the patient was unlikely to survive,” Dr. Durrant recalled.
Prior to the head bleed, the patient, who was African-American, had been undergoing dialysis for end-stage kidney disease, a clinical service that the neurocritical care unit was not able to provide.
“Our conversations with the patient's family began with us saying that end-stage dialysis was not something we would be able to offer long-term due to the patient's neurologic condition,” recalled Dr. Durrant, assistant professor of neurology and neurocritical care at OHSU.
“The family members perceived those statements as a threat—that we were withholding treatment this patient had received before without any problem, and the person was going to die because of that. That quickly turned our interactions quite antagonistic.”
Upon reflection, Dr. Durrant realized where the interactions had gone wrong. “Instead of beginning the conversation by saying, ‘Here are the illnesses your loved one is going through,’ and focusing first on those, we brought up the fact that we couldn't do dialysis very early on,” she said.
“I thought, ‘If this had been a white patient coming in, would our initial conversations have been about the dialysis, or would they have been more focused on the acute aspect of the devastating injury?’ Instead, we went ahead and talked about withdrawing what the family had perceived as keeping this person alive. Because of how we presented it, and because we did not think about the perception of the medical community trying to withhold treatment from marginalized communities, we went in there in a way that appeared to be ‘guns blazing,’ and the family instantly reacted to that.”
A devastating diagnosis or prognosis can be overwhelming, no matter the race or ethnicity the patient or caregiver. But when neurologists and neurocritical care specialists deliver these difficult diagnoses, they're not given in a vacuum. People facing devastating diagnoses—brain death, an aggressive brain tumor, a rapidly progressing neurodegenerative condition—come to these situations with personal and cultural histories that affect how they and their families experience those diagnoses.
For example, in the recent cases in which families have challenged determinations of death by neurologic criteria, a significant number of these families were black. Jahi McMath, Israel Stinson, Titus Cromer were all young black people dying suddenly and unexpectedly. In each of these cases, the children's parents expressed a sense of anger at how they were treated by the health care system. “I can't prove it, but I really feel in my heart: if Jahi was a little white girl, I feel we would have gotten a little more help and attention,” said Jahi McMath's mother, Nailah Winkfield in a New Yorker article.
The Context for Bad News
Neurologists and neurocritical care specialists delivering diagnoses like these have to be aware of the context in which that news will be received, said Yazmin Odia, MD, MS, FAAN, chief of neuro-oncology at Miami Cancer Institute at Baptist Health South Florida and chair of the AAN Diversity Leadership Subcommittee. “I have black patients who still refer to Tuskegee. It may have happened decades ago, but it's still in their minds. And how can it not be when these issues keep happening?”
The health care system has a history of ignoring, demeaning, or abusing patients of color, including cases involving the Tuskegee syphilis study, to the exploitation of Henrietta Lacks, to present-day situations like Serena Williams nearly dying from a blood clot after childbirth when her clear understanding of what was happening to her wasn't taken seriously by her doctors. And a litany of evidence documents that the US health care system as a whole still does not perform well for black Americans: On average, they experience reduced access to care, lower quality of care, and poorer outcomes than their white counterparts, according to a report published last year by the Commonwealth Fund.
Neuro-oncologists like Dr. Odia frequently face situations where communicating bad news or difficult diagnoses is affected by a patient's or family's cultural, ethnic, or racial background. “For example, I had a patient from a country in Latin America with a particularly aggressive brain tumor. I had detailed to her the importance of getting chemotherapy and radiation, but she kept missing appointments, something that we as doctors often refer to as ‘non-compliance,’” she said. “But how much of what we call non-compliance can be traced back to poor communication on our part?”
Dr. Odia's patient returned to the emergency department multiple times with refractory seizures, but still refused treatment. “I finally sat down with her and said, ‘I'd like to understand. What worries you the most about what we have recommended? What is your major concern?’ She looked me straight in the eye and said, ‘I don't want you to experiment on me.’ I was really taken aback,” she said. “I realized she saw me as someone who was just toying with her. I said, ‘I'm so sorry that you think that. I want you to know that everything we have recommended has been studied in many people and has been proven. These are not experiments. But ultimately the decision is yours.’”
The patient expressed understanding and appreciation, but ultimately still declined therapy for fear radiation was detrimental rather than beneficial.
How to Improve Communication
In these difficult situations, when patients and families are frightened, worried, and in pain, how can the neurologist communicate in a way that bridges these cultural, ethnic, and racial divides?
- Create a safe place for communication. “Doctors should make listening more than talking a priority,” said Nicte I. Mejia, MD, MPH, FAAN, assistant professor of neurology at Harvard Medical School and Director of MGH Neurology Community Health, Diversity and Inclusion. “In challenging situations, there is a lot clinicians need to communicate. Make sure you have enough time, and that no one is rushed—that you are a private space where people can feel comfortable talking, and that the right people are around the table. Those very basic things matter.”
- Prepare for the conversation in advance. “Take some time to think about who you are going to communicate with and what it is that you want to communicate,” said Jeffrey McClean, MD, FAAN, chair of the AAN's Equity, Diversity, and Inclusion Joint Coordinating Council. “One of the most important things we do as neurologists is to provide information and understanding and comfort in these types of tragic situations, and we must take that responsibility to the patient and their families very seriously,” Dr. McClean said.
“At my institution we do a simulation of communicating bad news, with a scenario in which a family member is brain dead, and the trainees must make that determination, and then communicate that information to the family. In the scenario, the family is angry and surprised and defensive and has a hard time trusting and believing what they are hearing. Having people go through that experience and be able to review it objectively does a lot to help people prepare to do it in actual patient care scenarios.”
- Avoid making assumptions. “We may have ideas of a person's life experiences and those of their loved ones, but these may not be correct,” Dr. Mejia said. “Challenging conversations require ‘cultural humility’: opening up your ears, eyes, and heart to listen with curiosity and learn about people's value system, beliefs, and preferences.”
- Acknowledge historical realities. “While we should not make assumptions about what a person's culture or experience has been, we as physicians, regardless of our own race or history, have to understand that there are longstanding barriers to trust in the health care system and in doctors for many people,” said Dr. McClean.
“If you aren't willing to accept that, you're never going to be able to have these conversations effectively, and it's going to lead to these sorts of tragic outcomes where that communication doesn't happen effectively and families don't feel that you have their best interests at heart.”
- Take responsibility. “Any mistrust our patients and their loved ones have in the system is not something that is necessarily my fault or something that I'm going to be able to fix as it is bigger than me,” Dr. Durrant said. “But it is really on us to examine our behaviors and the legacy that we have inherited to make sure that when we're having these conversations with patients and families that we're aware of this past and make extra sure that we don't carry it on.”
- Don't hide behind technical terms. “I am constantly telling people bad news: that they have a fatal disease or are in the process of dying,” said Dr. Odia. “I have to find a way to tell people these uncomfortable truths in a clear way, but with empathy. As doctors we don't like having to tell people bad news, so we hide behind words. We don't want to say ‘cancer’ or ‘dying’ or ‘fatal,’ so we say ‘This malignancy is very difficult to treat.’ I don't do that. I'll say things like ‘You have a cancer in the brain, and we can't get it all out, because it has roots. I wish we could, but unfortunately, nothing we can do will cure this cancer.’ Be simple, clear, and compassionate.”
- Ask questions. “We assume we know what a patient or family member is thinking. But often we don't,” said Dr. Mejia. “Ask non-judgmental, open-ended questions like ‘What is your greatest concern about what I've just told you?’ and then pause, sit, and allow them to speak freely.”
- Take time. “We work in such busy times. We have to spread out our time so much,” Dr. Durrant said. “When problems happen and there are legal challenges or court cases, it often goes back to the fact that we didn't spend enough time with the patient and family. We need to take extra care, extra time, and have extra patience when we are getting into situations where the emotions are high and there is mistrust. We are caring for the family as well as the patient, and our role is also to do no harm to them.”
- Remember that it's not about you. “When I'm talking to a patient or family members about a very severe illness, they need me,” said Dr. Durrant. “These conversations can be exceedingly fraught, emotional and angry, and at those times when we feel emotion directed against us, we sometimes want to minimize the amount we talk and interact with these patients and families. It's a fight-or-flight response. But the time when they are most upset with us is the time we most need to be there and hear about how it's affecting them. Instead of getting defensive, the more we lean into the hard conversations and the more we allow time for emotion and processing and all that encompasses, the more we can start building that trust.”