What people really say before they die is a "little-studied realm," but recent investigations are beginning to shed light on the subject—and suggesting ways that providers can better care for patients at the end of life, Michael Erard writes for the Atlantic.

5 characteristics of effective palliative care programs

A little-studied field

While linguists have exhaustively studied how children acquire language at the start of life, Erard writes, "there's next to nothing to look up" on the linguistic patterns of dying patients.

One reason, according to Erard, is that studying a dying person's final interactions presents ethical concerns—especially because doctors tend to prioritize researching ways to relieve dying patients' physical suffering.

These barriers to research make "studying language and interaction at the end of life ... a challenge," Erard writes.

What dying people say

Despite the scarcity of research, Erard found a few works that attempt to analyze patients' final words. The most common examples, he suggests, fall into three categories.

1. 'Mama,' curse words, and other brief utterances
2. 
   

   Maureen Keeley—co-author of a book called "Final Conversations," which summarizes a 12-year body of research to help people have meaningful conversations with dying people—said that most end-of-life interactions are nonverbal, simply because dying people lack the strength to hold longer conversations. "People will whisper, and they'll be brief, single words—that's all they have energy for," she said.

   Often, Erard writes the dying person's speech is repetitive. For instance, people who are nearing the end of their lives might repeat curse words or the names of their children and spouses. Erard cites an essay published in Der Spiegel that stated, "The last words of dying men often resembled each other. ... Almost everyone is calling for 'Mommy' or 'Mama' with the last breath."

3. An longer, ongoing narrative (that may not make sense to the living)
4. 
   

   Still, some dying individuals find the energy to tell a bigger story—sometimes in disconnected fashion over the course of days, Erard writes. He cites a book called "Words on the Threshold" by Lisa Smartt, for which that found dying people often speak in ongoing narratives.

    

   
   How to improve end-of-life care for cancer patients

    

   For the book, Smartt observed the linguistic patterns of 180 dying people, including her father.

   In one instance, Smartt observed a man who described a train being stuck at a station. A few days later, he said the train was repaired. In another few weeks, the man mentioned that the train was headed north. 

   "If you just walk through the room and you heard your loved one talk about 'Oh, there's a boxing champion standing by my bed,' that just sounds like some kind of hallucination," Smartt said. "But if you see over time that that person has been talking about the boxing champion and having him wearing that, or doing this, you think, 'Wow, there's this narrative going on.'"

   But those narratives will not always make sense to the living. Before her father's death, Smartt noticed that he often used pronouns like "it" and "this," but the pronouns would not refer to anything obvious. For instance, he would say things like "I got to go down there. I have to go down," when there was nothing below him, according to Smartt. 

5. A description of a journey
6. 
   

   Travel also revealed itself as a theme in Smartt's books, as well as in a separate book by hospice nurses Maggie Callanan and Patricia Kelley. In their book, Final Gifts, Callanan and Kelley said people who are nearing the end of their lives "often use the metaphor of travel to alert those around them that it is time for them to die." 

   In one instance, a girl who was dying of cancer seemed worried about finding a map, which Callanan and Kelley determined was a metaphor for the "impending end" of her life. "If I could find the map, I could go home," she would say.

Why end-of-life communication matters for health care providers

Even though past researchers have largely overlooked end-of-life communication, it's an increasingly important area of study as people live longer and deaths are more drawn-out, Erard argues.

More patients are choosing to die in hospitals, hospices, and nursing homes, he writes, and understanding what these patients are saying in their dying days might help improve their end-of-life experience. "[A] more detailed road map of changes could help counter people's fear of death and provide them with some sense of control," Erard writes.

Better understanding of the linguistics of dying people "could also offer insight into how" clinicians can "communicate better with the dying," so that people who die in hospitals or long-term care facilities can communicate their wishes and maintain their agency long after their linguistic abilities decline, Erard writes (Erard, The Atlantic, 1/16; Keeley/Generous, Final Conversations: Overview and Practical Implications for Patients, Families, and Healthcare Workers, June 2017).

Next, get URMC's end-of-life conversation prompts

When it comes to end-of-life care, most organizations struggle to meet patients' needs. In a recent poll, 87% of Americans age 65 and older said that they believe their doctor should discuss end-of-life issues with their patients; however, only 27% of those polled had actually discussed these issues with their doctor.

Download URMC's conversation prompts to start improving end-of-life care for patients.

Download Now