Learning to Say the Word "Die"

2015 - 4 August – Post-Intensive Care Syndrome
This article reflects on the observations of three experts who have piloted a training course on effectively communicating bad news with patients' families.

 

“Die.” It’s a heavy word often required of critical care practitioners during emotional family meetings. Yet, it can be difficult for clinicians to utter, causing confusion and added stress for loved ones. A pilot program at Cleveland Clinic aims to help educate fellows on how to deliver bad news, stressing the importance of communication as a learned skill that should be taught alongside a medical curriculum. 

“It’s hard to get people who are not terribly comfortable saying, ‘Your  loved one might die,’ to learn how to give that kind of message in a way that families can hear, ” said Patricia Mayer, MD, MS, an advanced bioethics fellow at Cleveland Clinic who helped develop the content of the program.
Led by champion Silvia Perez-Protto, MD, the hospital’s pilot program was started in 2014 with a simple concept: to capture role playing scenarios on video and allow fellows to evaluate their own performance with feedback from others.
 
Perez-Protto, an intensivist with previous experience as a transplant coordinator specialist, and her team organized a video recording session with three critical care fellows. The fellows practiced delivering bad news to critical care staff, other critical care fellows, and a bioethicist “acting” as families and loved ones of the patients. All the cases involved patients with a high risk of dying shortly, with one also at high risk of brain death.
The fellows’ job was to communicate the severity of the patient’s condition and next steps in the plan of care to the family or friends of the patient.
What they found upon reviewing their performances was eye-opening.
 
“They couldn’t say ‘die’,” said Perez-Protto. “Families are expecting them to be honest and expecting them to communicate in words they understand. They relied on a lot of technical words that aren’t always clear to the general population.”
 
The participants were much more comfortable using phrases such as: “failing,” “not doing well,” “may do poorly,” “multi-organ failure,” “no improvement,” or “no brain activity.”
 
This was true even when “actors” directly asked the fellow delivering bad news, “Do you mean my father might die?”
 
“These fellows reflect America, and Americans are not comfortable with death,” said Mayer.
 
The fellows also are representative of the wider medical community. Numerous studies have revealed the need for improved communication around the subject of death in the intensive care unit. An op-ed in the Los Angeles Times cites a study where only 11% of doctors said they personally spoke with patients about death. The piece, authored by Nora Zamichow, goes on to recount the author’s personal experience when her husband was diagnosed with an inoperable brain tumor. She notes, “Eventually, doctors spouted euphemisms that even I, a former medical reporter, couldn't decipher. Or they hinted, saying, ‘Treatment isn't going our way,’ without ruling out the possibility that it might go ‘our way.’ Finally, toward the end, doctors said, ‘Soon consider hospice.’”
 
Not only are some medical professionals uncomfortable with the subject, they also must deliver such news in widely varying circumstances. Within one family meeting, there may be participants with varying cultural sensitivities, educational levels and understanding of the situation. Bad news must sometimes be delivered not only to relatives but to friends, co-workers or others close to the patient.

Even though fellows proved empathetic during the mock interviews, review of the videotapes helped them identify room for improvement, such as increasing eye contact, improving posture and presenting news with a calm demeanor.
 
Each fellow experienced some version of: “Do I really do that?”
 
“We didn’t actually have to provide a lot of feedback, because the fellows provided their own feedback, such as, ‘Oh my goodness, I didn’t know I held my head that way when I talked to people.’ They helped each other,” noted Mayer.
 
The important message for fellows, according to Mayer, is that it’s okay to not feel comfortable with these topics. These skills are teachable.
After taking the pilot course, fellows are invited to deliver the message in real scenarios with families, while being supervised by a physician.
 
Follow-up evaluations from the fellows involved all yield positive feedback, and the video playback felt very different from getting oral feedback following a witnessed interaction. Participants recognized that they needed to practice saying difficult words such as “death,” “likely to die” and “has suffered brain death.” All of them also concluded they need to be more direct, use simpler explanations and utilize silence more. Silence gives time for the family to process the information and ask questions. It is important for the family to sense that the doctor is not rushed to do other things and is open to questions.
 
Next Phases for Success
The pilot program is in the process of expanding, with the length of videos shortened from five to seven minutes to two to three minutes. Though a conversation with a family is obviously much longer, the idea is to have the videos focus on a specific learning object.
 
“In the initial pilot, fellows said, ‘The patient is very sick and could die,’” said Mayer. “We gave them some wiggle room, and they wiggled right out of talking about dying.”
 
Not so going forward. Fellows have to say that the patient is most certainly going to die.
 
Perez-Protto suggested the program could also be expanded to other areas, depending on a hospital’s needs and resources.  Videotaped, role-playing exercises could be helpful in teaching how to communicate effectively with families about brain death, the overall intensive care unit stay, post-intensive care syndrome, do-not-resuscitate orders, and decision-making for patients without surrogates. The key is teaching these communication tools, allowing fellows to practice, and giving them an opportunity to evaluate their own performances.
 
Marc Popovich, MD, FCCM, who also served on the pilot program team, noted, “There are so many times, as clinicians, we might listen to conversations where the person talking to the family thinks they’ve done a great job. But, as an observer, you pick up on areas of the conversation that are too filled with medical speak, too hedging, not direct. There are all kinds of areas where this model could be applied.”
 
Reproducing Results
Mayer stressed that, if there was interest to recreate similar programs, the project could be done using relatively low-tech resources.
 
“The difficult piece is finding a senior person with in-depth knowledge on how to conduct these discussions to build the content of the program—someone who uses appropriate words and can efficiently guide the educational aspects,” she said.
 
Perez-Protto suggested that an ethics or palliative medicine specialist could contribute to a project such as this but noted that any professional trained in communication, particularly in delivering bad news, would be an effective champion or partner.
 
“We used the Cleveland Clinic’s media department to record the sessions, just because we had one here,” said Mayer. “But Silvia and I practiced with a home video recorder at first in a small room. That worked well. The sound, images and lighting were better with the professional video team, but a person can certainly do this in a very low-tech way.”
 
Perez-Protto originally developed the concept of the program by drawing on training she received in Spain related to communicating with potential organ donor families.
 
“The goal was to deliver the diagnosis of brain death first and then to offer the donation option to families,” she said. “I learned how to conduct the interview with the family—making pauses, using short sentences and simple language, and avoiding certain words. The interviews were recorded, and I found it very powerful to see myself afterwards. I found areas to work on and got input from the group and experts.”
 
Mayer feels confident the lessons taught in the pilot program will create a strong foundation for a career that requires robust and developed communication skills.  “I can recall that when I was in medical school in training, people asked me to deliver bad news. I thought I wasn’t good at it, but really I hadn’t been taught,” she concluded.  
 
Popovich said the team “believes all critical care fellows should undergo formal training as part of their curriculum to prepare them to be responsible for this type of communication. Such training may reduce the likelihood of misstatements that can complicate the decision-making process for the family or influence their emotions negatively.”
 
All said, these encounters with physicians are unique experiences for families that may impact situational coping and the grief process. Learning to explain the progress of a disease and the concept of “dying” in simple terms, the team notes, is a fundamental tool in the course of a medical career. Simply put, delivering bad news can be made easier by controlled, videotaped practice with collegial feedback.