How do you tell someone that they’re dying? Telling someone they have a terminal illness is a regular part of the job for some doctors. Yet, the folks behind the Alive Institute initiative believe that many healthcare professionals aren’t adequately trained to handle these incredibly difficult and sensitive end-of-life conversations.
Alive Institute was launched by the Tennessee-based nonprofit Alive Hospice to provide education and training to those in the field of hospice and palliative care. In addition to other resources, the organization offers a unique program, the Alive Institute Simulation Lab For End-of-Life Conversations. It provides immersive training in end-of-life communication for health care professionals and students that goes beyond the brief training most medical students receive.
Conducting end-of-life conversations skillfully requires a specific skill set that takes practice to acquire. Doctors must prioritize compassion and patience. They also need to develop an understanding of the fine line between direct and honest and blunt and harsh communication styles. In other words, they need to learn that how they deliver a message is just as important as what they say.
A Doctor’s Story
Take the story of Dr. Kate Granger. Granger was an English geriatrician who took a particular interest in end-of-life communication after learning she had a desmoplastic small-round tumor (DCRCT), a type of sarcoma. She describes being alone and in pain when the doctor told her “without a warning shot” that her MRI scan showed that her cancer had spread. “He was basically giving me a death sentence,” Granger told journalist Chrissie Giles, in an interview with the BBC. “He sort of couldn’t wait to leave the room, and I never saw him again.”
Granger was changed by the experience. “I think I was a fairly compassionate, empathetic doctor,” she explains. “But having been through all I’ve been through, when I came back to work I was just so much more aware of how body language is really important, how you think about the impact of bad news on an individual more than just viewing ‘telling Mrs Smith that she’s got lung cancer’ as a task.’”
Timing Is Everything
Developing end-of-life communication skills also requires flexibility. Some patients will want to have open conversations about their prognosis early on. Others will want to delay them until the disease progresses further. Still others prefer not to have the conversations at all.
Dr. Stephen Barclay, a lecturer and palliative care physician at the University of Cambridge, led a research group that looked at the timing of end-of-life conversations with patients who had a terminal illnesses. Based on the results, Barclay warns clinicians that rushing into end-of-life conversations when a patient is resistant is putting “professional tidiness” ahead of patient-centered care.
On the other hand, some evidence suggests that open communication can increase hope for terminal patients. For example, Katherine Sleeman, a medical doctor and lecturer at King’s College London, cites a study of patients with end-stage renal disease that found that giving patients more information early in the course of an illness “provides an opportunity to reshape hopes, making them more consistent with the future.”
No matter how you view them, end-of-life conversations are hard. And teaching doctors how to break the news with compassion and empathy will never be an easy task. But patients can’t make plans or adjust their goals if they don’t know the truth. Hopefully, organizations like Alive Institute can help to make that easier for them to hear.