When Ron Naito, who'd been an internist for nearly 40 years, saw the results of his blood test last August, he knew he had terminal cancer—yet none of his providers knew how to break the news. Now, in his final months, he's working to make sure doctors know how to talk to their patients about death, JoNel Aleccia writes for Kaiser Health News.
After diagnosing himself with stage 4 pancreatic cancer in August 2018, Naito decided to seek out additional opinions to confirm the results, Aleccia writes.
The first doctor Naito visited—a doctor who'd been a colleague of his for 10 years—refused to acknowledge the results of the blood test. "He simply didn't want to tell me," Naito said.
A second doctor did a tumor biopsy and discussed the results with a medical student outside the exam room where Naito was waiting.
"They walk by one time and I can hear [the doctor] say 'five centimeters,'" Naito said. "Then they walk the other way and I can hear him say, 'Very bad.'" Naito said he knew what they were talking about. "Once [tumors grow] beyond three centimeters, they're big. It's a negative sign," he said.
The difficulties of talking about death
Naito is far from the only patient to find himself on the other end of poorly delivered bad news.
Anthony Back—an oncologist and palliative care expert at the University of Washington in Seattle and co-founder of VitalTalk, an organization aimed at teaching doctors how to improve their communication skills—estimated that up to 75% of patients with serious illnesses receive news in a "suboptimal way."
"Naito was given the news in the way that many people receive it," Back said. "If the system doesn't work for him, who's it going to work for?"
In a recent article in the Journal of the American Geriatrics Society, Back noted that doctors often avoid these types of conversations entirely, or talk to patients using medical jargon. They often don't notice when patients don't understand what's being said to them, or that patients are so overwhelmed with emotion that they can't take in the information.
How doctors can do better
The problem isn't that doctors don't want to do better—it's that they don't know how, Aleccia reports. A 2018 survey found that nearly all doctors believe these conversations are important, but less than a third of them said they had been trained to have them.
Back said there's evidence these skills can be taught and that doctors can get better at talking about death with patients. However, they must be taught carefully as many doctors find criticisms of their bedside manner to be similar to "character assassination," Back said.
For example, doctors can be taught to use a communication model called "Ask-Tell-Ask," Aleccia writes. Using this model, doctors ask a patient about their understanding of their disease or condition, tell them in a straightforward way their bad news and what their treatment options are, and then ask them if they understood what was just said to them.
A man on a mission
After his own experience, Naito has made it his dying mission to help doctors learn how to do better. Specifically, since his diagnosis in August, Naito has begun mentoring medical students at Oregon Health & Science University (OHSU) and speaking publicly about how doctors can change the way they talk about death, Aleccia writes. "Historically, it's something we've never been taught," he said. "Everyone feels uncomfortable doing it. It's a very difficult thing."
Naito shared his experience in a course at OHSU called "Living With Life-Threatening Illness," in which students are paired with sick and dying patients. Naito said he hopes students will use his experience to learn better approaches to delivering bad news.
One of his students, Alyssa Hjelvik, said, "He impressed upon me that it's so critical to be fully present and genuine. It's something he cultivated over several years in practice."
Naito said talking about death "doesn't have to be something you dread." He continued, "It can be a really heartfelt, deep experience to tell someone this, to tell another human being" (Aleccia, Kaiser Health News, 6/12).
Download 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.