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PORTLAND, Oregon – After nearly 40 years as an internist, Dr. Ron Naito knew what the dizzying results of his blood test meant. And it was not good.
But when he turned to his doctors last summer to confirm his diagnosis – Stage 4 pancreatic cancer – he learned the news in a way that no one patient should not have.
The first doctor, a specialist Naito had known for 10 years, refused to recognize the results of the "off-the-scale" blood test that revealed undeniable signs of advanced cancer. "He just did not want to tell me," Naito said.
A second specialist performed a biopsy of the tumor, and then discussed the results with a medical student in front of the open door of the examination room where Naito had been waiting.
"They walk once and I can hear [the doctor] say "5 centimeters," said Naito. "Then they walk the other way and I hear him say," Very badly. "
Months later, the shock stayed cool.
"I knew what it was," said Naito last month, her thick voice of emotion. "Once [tumors grow] beyond 3 centimeters, they are tall. It's a negative sign.
Naito was determined to share one last lesson with future doctors: pay attention to how you tell patients that they are dying.
Since August, when he calculated that he had six months left to live, Naito mentored medical students at Oregon Health & Science University and publicly expressed himself on the need for physicians to improve the way they advertise bad news.
"Historically, it's something that has never been taught," said Naito, skinny and bald under the effects of repeated cycles of chemotherapy. "Everyone feels uncomfortable doing it. It's a very difficult thing. "
"Solid research has shown that doctors are notoriously ill-equipped to deliver life-changing information," said Dr. Anthony Back, an oncologist and palliative care specialist at the University of Washington in Seattle, who was not surprised. poor management of Naito's diagnosis.
"Dr. Naito has been informed of how many people are receiving it, "said Back, co-founder of VitalTalk, one of many organizations that teach doctors how to improve their communication skills. "If the system does not work for him, who will he work for?"
Nearly three-quarters of critically ill patients receive news of what researchers call a "suboptimal method," says Back.
"Sub-optimal" is the least offensive term for practicing doctors, he added.
The poor delivery of Naito's diagnosis is a reflection of the current practice in a country where Back estimates that more than 200,000 doctors and other providers could benefit from communication training.
Too often, doctors totally avoid these conversations or talk to patients using medical jargon. They often fail to notice that patients do not follow the conversation or are too overwhelmed by emotions to absorb information, noted Back in a recent article.
"[Doctors] Enter and say, "It's cancer," they do not sit down, they tell you from the door, then they turn around and leave, "he said.
Indeed, for many doctors, especially those who treat cancer and other difficult diseases, "death is considered a failure," said Dr. Brad Stuart, palliative care expert and chief physician of the Coalition to transform advanced care (C-TAC.) They will often continue to prescribe treatment, even if it is futile, said Stuart.It is the difference between curing an illness and healing a person physically, emotionally and spiritually, he adds.
"Healing is what it is and healing has been forgotten," Stuart said.
The result is that dying patients are often misinformed. A study conducted in 2016 found that just 5% of cancer patients had sufficiently understood their prognoses to make informed decisions about their care. Another study found that 80% of patients with metastatic colon cancer thought they could be cured. In fact, chemotherapy can prolong life for weeks or months and help reduce symptoms without stopping the disease.
Without a clear understanding of the disease, a person can not plan his death, said Naito.
Naito hugs Dolly, his cat, at his home in Portland, Oregon, in May 2019. The poor diagnosis of Naito's Stage 4 pancreatic cancer diagnosis has left him determined to share his experience with future doctors. .
"You can not go through your spiritual life, you can not prepare to die," said Naito. "Of course, you have your [legal] will, but there is much more than that. "
The doctors who treated him had the best intentions in the world, said Naito, who refused to identify them publicly or to visit the clinic where they worked. Reached for verification, clinic officials declined to comment, citing confidentiality rules.
Most doctors consider that open communication about death is essential, according to research. A 2018 telephone survey of physicians found that almost all thought end-of-life discussions were important – but less than a third of them said they were trained in these discussions.
Back, who has been advocating for better medical communication for two decades, said there is evidence that skills can be taught – and that doctors can improve. Many doctors are bridging any criticism of their behavior at the bedside, viewing it as a kind of character assassination, said Back.
"But these are skills, doctors can acquire them, you can measure what they acquire," he said.
It's a bit like learning to play basketball, he added. You do layups, you go to practice, you play games and get feedback – and you get better.
For example, doctors can learn – and put into practice – a simple communication model called "Ask, say and ask." They question the patient about his understanding of his illness or condition; inform them in plain and simple language about bad news or treatment options; then ask if the patient has understood what has just been said.
Naito shared her experience with medical students as part of an OHSU course entitled "Living with a life-threatening illness," which associates students with sick and dying patients.
"He was able to speak very openly and calmly about his own experience," said Amanda Ashley, Associate Director of OSHSU's Center for Health Care Ethics. "He could teach a lot about the difference."
Alyssa Hjelvik, 28, a first-year medical student, spent more time with Naito than she needed to, and discovered what it means to be a doctor and what it means to die. The experience, she said, was "pretty deep"
"He made me understand how important it is to be fully present and authentic," said Hjelvik, who is considering a career as a cancer specialist. "It's something he has cultivated for many years in practice."
Naito, who has undergone 10 cycles of chemotherapy, recently awarded the center $ 1 million from the foundation created in her name. He said he hoped future doctors like Hjelvik – and their current colleagues – would use his experience to shape the way they delivered bad news.
"The more people know it, it must not be something that you fear," he said. "I think we should take that away from drugs. It can be a deep and sincere experience to tell someone to talk to another human being. "
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