Is this any way to learn you’re dying — hearing MDs chat outside exam room?

NaitoRon Naito already had been rebuffed by one specialist about the severity of his illness. He was awaiting in a doctor’s examining room for his lab test results and a consultation with a second expert about his already advanced cancer. What happened next stunned the Portland, Ore., resident. But now he’s doing something to help other patients in this way too common situation.

Naito overheard his doctor and a medical student talking about him and his lab results as they passed by the open room door, saying a tumor in his pancreas was “5 centimeters,” and was “very bad.”

That was the way Naito, who has practiced as an internist for 40 years, learned his condition was terminal. The cruel delivery of that crucial news convinced him that he needed to spend what time he has left working with his medical colleagues about their communication skills, especially in conveying the news to patients that they are dying.

JoNel Aleccia, who writes for the Kaiser Health News Service, reported that Naito — thin, frail, and balding due to chemotherapy —told her doctors aren’t well equipped to deliver terminal diagnoses: “Historically, it’s something we’ve never been taught. Everyone feels uncomfortable doing it. It’s a very difficult thing.”

And doctors too often botch it, Aleccia found, quoting Dr. Anthony Back, an oncologist, palliative care expert at the University of Washington in Seattle, and a co-founder of VitalTalk, one of several organizations that teach doctors to improve their communication skills. As Aleccia reported:

Up to three-quarters of all patients with serious illness receive news in what researchers call a “suboptimal way,” Back estimated. 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 training. Too often, doctors avoid such conversations entirely, or they speak to patients using medical jargon. They frequently fail to notice that patients aren’t following the conversation or that they’re too overwhelmed with emotion to absorb the information, Back noted in a recent article.

He said doctors will stand in an exam room doorway, tell patients of a late-stage cancer diagnosis, then turn and leave without sitting down or talking with the thunder-struck patients.

Naito, who has stopped practicing, has lectured and talked with medical school students in Oregon, urging them to be more compassionate and offering his thoughts on how they can deal with what may be one of the most challenging kind of talks they will have with their patients. He says the caregivers owe those they are treating the time, dignity, and respect of full and open communications, so they can not only get over their shocking news but figure how best to deal with all the aspects of dying, including their spiritual needs.

Issues about dying with grace and respect will only increase in importance as the nation grays rapidly. But Dr. Brad Stuart, a palliative care expert and chief medical officer for the Coalition to Transform Advanced Care, or C-TAC, told Aleccia that too many doctors adopt the idea that disease must be battled and so they see death as a personal and professional defeat. They can’t cope with that, and too many of them not only communicate poorly with patients, as a result, they also persist in subjecting them to unneeded, unhelpful, costly, and invasive treatment. As she reported:

The result is that dying patients are often ill-informed. A 2016 study found that just 5% of cancer patients accurately understood their prognoses well enough to make informed decisions about their care. Another study found that 80% of patients with metastatic colon cancer thought they could be cured. In reality, chemotherapy can prolong life by weeks or months, and help ease symptoms, but it will not stop the disease.

In my practice, I see not only the harm that patients suffer while seeking medical services, but also their struggles to access and afford safe, efficient, and excellent medical care. This has become an even greater ordeal due to the skyrocketing cost, complexity, and uncertainty of therapies and prescription medications, too many of which damage patients and their loved ones because they prove to be dangerous drugs.

fundamental right for patients is informed consent, which must be provided to them by all their medical caregivers. This means they are told clearly and fully all the important facts they need to make an intelligent decision about what treatments to have, where to get them, and from whom. It is a common-sense extension of this key concept that patients with terminal illnesses should learn, candidly and directly from their doctors, about the last stages of their lives. This continuing dialogue must occur with patience, dignity, and compassion. This can be among the most terrifying experiences in a lifetime, and those who are in pain and desperately ill or injured need more — not cursory — time, consideration, and focus from their doctors.

Part of patients’ fear and dread about death may result from their sense of helplessness and worry that they will burden loved ones. While healthy, or relatively so, they may consider working with their loved ones, doctors, lawyers, and financial advisers to ensure their wishes about their lives, especially near and at the end, get fully considered with the power of the advanced directive and other legal and medical planning tools.

The advance directive is a form that you can get from groups like the AARP (the documents vary, state by state). Be sure that everyone who might need to see the directive in stressful, potentially emergency situations know where it’s at, including, possibly as an attachment to your electronic health records.

By the way, patients and families also need to think carefully about resuscitation orders and optimism that may underlie them. For the elderly, and especially for those who already are sick and frail, the most common procedure of CPR (cardiopulmonary resuscitation) can have poor outcomes. If patients are revived and sustain for some time, they often may experience pain: CPR may not seem invasive, but it often breaks ribs and can leave bruised patients in discomfort (rib injuries are among the most challenging, because they can affect all manner of everyday activities, including breathing, coughing, laughing, and eating). If elderly patients respond to CPR, they often then may need intubation and the statistics on that procedure aren’t rosy.

As for Naito, he has declined to identify and criticize his own doctors, including the specialist whom he said he has known for a decade but refused to give him the news about the severity of his condition, resulting in his getting the information in a bad way. He has pledged $1 million from a foundation he has established to support improvements of doctors’ communications skills.

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