PORTLAND, Ore. – After almost 40 years as an internist, Dr. Ron Naito, what the heavenly results of his blood test meant. And it wasn't good.
But when he turned to his doctors last summer to confirm the serious diagnosis – phase 4 pancreatic cancer – he learned the news in a way that no patient should.
The first doctor, a specialist Naito had known for 10 years, refused to recognize the results of the "off-the-scale" blood sample, which showed unmistakable signs of advanced cancer. "He simply wouldn't tell me," Naito said.
Another specialist performed a tumor biopsy and then discussed the results with a doctor outside the open door of the exam room where Naito waited.
"They go at a time, and I can say, say" 5 centimeters, "said Naito." Then they go the other way, and I can hear him say, "Very bad." "
Months later, the shock remained fresh.
"I knew what it was," said Naito last month, his voice thick with emotion. "Once [tumors grow] beyond 3 centimeters, they are big. It's a negative sign. "
The clear disclosure of his gloomy diagnosis left Naito determined to share a last lesson with future doctors: Beware how to tell patients they die.
Since August, when he had calculated, he had six months to live, Naito mentor teacher students at Oregon Health & Science University have spoken publicly about the need for doctors to improve the way they break bad news.
"Historically, this is something we have never been taught," said Naito, thin and bald from the effects of repeated rounds of chemotherapy. "Everyone feels uncomfortable doing so. It's a very difficult thing. "
Robust research shows that doctors are notoriously bad at delivering life-changing news," said Dr. Anthony Back, an oncologist and palliative care expert at the University of Washington in Seattle, who was not surprised that Naito's diagnosis was poorly handled. [1
Up to three-quarters of all patients with severe disease receive news in what researchers call a" suboptimal way ", estimated back. " Suboptimal "is the term that is least offensive to practicing doctors , "he added.
The poor delivery of Naito's diagnosis reflects common practice in a country where Back estimates that more than 200,000 doctors and other providers could benefit from communication education.
Too often doctors avoid such conversations altogether, or they talk to patients using medical jargon. They often fail to notice that patients do not follow the conversation or that they are too overwhelmed with emotions to absorb the information. Back noticed in a new article.
"[Doctors] came in and said:" It is cancerous, "They do not sit down, they tell you from the doorway, and then they turn around and leave," he said.
It is due to many doctors, especially those who treat cancer and other challenging diseases, "death is seen as a mistake," said Dr. Brad Stuart, a palliative care expert and coalition chief teacher to transform Advanced Care or C-TAC. They will often continue to prescribe treatment, even if it is in vain, Stuart said. It is the difference between healing an illness and healing a person physically, emotionally and spiritually, he added.
"Hardening is what it's about, and healing has been forgotten," Stuart said.
The result is that dying patients are often uninformed. A 2016 study showed that only 5% of cancer patients accurately understood their expectations 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 ease the symptoms, but it won't stop the disease.
Without a clear understanding of the disease, a person cannot plan for death, Naito said.
Naito hugs his cat, Dolly, at his Portland, Ore., Home in May 2019. The poor delivery of Naito's stage 4 pancreatic cancer diagnosis made him determined to share his experience with future doctors.
"You can't go through your spiritual life, you can't prepare yourself to die," Naito said. "Yes, you have your will, but there is much more to it than that."
The doctors who treated him had the best intentions, said Naito, who declined to publicly identify them or the clinic where they were working. Obtained for control, clinic officials refused to comment, citing privacy rules.
In fact, most doctors consider open communication about death vital, research shows. A 2018 doctors' medical survey found that almost everyone thought even life negotiations were important – but fewer than one-third said they had been trained to have them.
Back, who has called for better medical communication for two decades, said there are signs that one can learn skills – and that doctors can improve. Many doctors adhere to any criticism of their bedtime and see it as something like "murder," Back said.
"But it's skills that doctors can acquire them, you can measure what they acquire," he said.
It's a bit like learning to play basketball, he added. You make layups, you go into practice, play games and get feedback – and you get better.
Doctors can e.g. Learn and practice a simple communication model called "Ask-Tell-Ask." They ask the patient about their understanding of their illness or condition. Tell him or her in a simple and simple language about the bad news or treatment options; then ask if the patient understood what was being said.
Naito shared his experience with medical students in an OHSU course called "Living With Life-Threatening Illness", which mates students with sick and dying patients.
"He was able to speak very openly and quite calmly about his own experience," says Amanda Ashley, Associate Director of the OHSU Center for Ethics in Health. "He was able to do a lot of teaching about how it could have been different."
Alyssa Hjelvik, 28, a first-year medical student, settled the expenses more than necessary with Naito and learned about what it means to be a doctor – and what it means to die. The experience said she was "quite deep."
"He impressed me that it is so critical to be fully present and genuine," says Hjelvik, who is considering a career as a cancer specialist. "It is something he has been practicing for several years in practice."
Naito, who has endured 10 rounds of chemotherapy, has recently given the center 1 million dollars from the foundation formed in his name. He said he hopes that future doctors like Hjelvik – and current colleagues – will use their experience to shape the way they deliver bad news.
"The more people know it, it doesn't have to be something you fear," said. "I think we should remove it from medicine. It can be a really deep and deep experience to tell someone about this to tell another person."