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ASHVILLE, Tenn. — The doctor pulls up a chair next to his patient, a 74-year-old woman with lung cancer. He tells her she doesn’t need more chemotherapy. Her eyes perk up; has she beaten her cancer? As it turns out, no. Her cancer has metastasized. She only has six months to live, at most. But her doctor is unable to find the right words.

“My cancer’s not gone? I thought it was getting better,” the patient says, bewildered.

“That’s the tough part …” the doctor replies.

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“So, no further treatment?”

“I think we need to focus on quality [of life] over quantity.”

“Are you saying I’m dying?”

From the other side of a two-way mirror, Anna-Gene O’Neal listens closely. She’s set up this simulation — the prognosis is part of a script; the patient is an actor; the physician is being recorded — to improve the way he broaches the topic of death with real patients. O’Neal hears the mock patient all but pleading with the doctor to give her a direct answer. He struggles to do so. After a few minutes, she opens the door to end the simulation.

O’Neal, who runs Alive Hospice here in Tennessee, launched the SHARE simulation lab last year. Participants run through four scenarios. The actors playing patients reply with all the emotions — confusion, denial, anger, grief — that doctors might encounter in real exam rooms. Afterwards, O’Neal sits with the doctors as they watch tape of these interactions on a big-screen TV.

Faced with the uncomfortable task of discussing death, doctors often avoid the topic. Only 17 percent of Medicare patients surveyed in a 2015 Kaiser Family Foundation study said they had discussed end-of-life care — though most wanted to do so. Since that study, Medicare has begun reimbursing providers for having these conversations. Yet still, just a fraction of Medicare recipients at the end of life have those talks with their doctors.

In response, advocates for improving end-of-life care have launched training sessions for doctors around the country.

In California, Stanford’s palliative medicine department has trained dozens of hospice nurses using exercises similar to those carried out here by Alive. In New York, oncologists at the University of Rochester Medical Center observe their peers having conversations with real patients facing terminal illness. In Arizona, the administrators of Phoenix-based Hospice of the West hold regular training sessions, complete with small group discussions, at staff meetings.

Simulators with live actors have intuitive appeal, especially since doctors rarely get hands-on experience with these tough conversations in medical school. But Dr. Scott Halpern, director of the University of Pennsylvania’s Palliative and Advanced Illness Research Center, said there’s little evidence that simulators are any more effective than any other clinical training to improve end-of-life counseling. They show a “tremendous amount of face validity,” he said, but they must be held “to a standard of showing benefits for patients, not a standard of an appealing anecdote.”

O’Neal, 50, agrees more evidence is needed. But she’s also so gung-ho about her simulator that she’s pushing to expand it across the country. Four health organizations — including faith-based Ascension Health — have agreed to let Alive train their clinicians. Later this year, O’Neal plans to work with medical students at one school in Tennessee. Down the road, she hopes to get some independent practice associations to require their members to undergo her training.

“It’s about doing the right thing,” O’Neal said. “I feel strongly that if you do the right thing by people, they’re going to make different decisions.” That shift could lead to more of what she calls “good deaths,” with patients fully aware of their prognosis and able to choose whether they want aggressive, long-shot treatments or would prefer to simply have their pain managed while they spend their final days with friends and family.

Not only could that benefit patients, O’Neal said, but it could save taxpayers big money: “The financial impact on health care will be monumental.”

Alive Hospice
Alive Hospice CEO Anna-Gene O’Neal chats with a doctor who went through a simulated scenario about how he can improve his communication with patients. Joon Powell for STAT

The little things that can make a big difference

Two of O’Neal’s closest friends died young from breast cancer. Seeing their hospice nurses bring light to the darkness of death prompted O’Neal to think back on her own professional experiences caring for babies as a neonatal nurse and for the elderly as a health care executive. What stood out: the power of clear, concise communication between clinician and patient.

O’Neal came to believe health providers in all specialties should be trained to have such direct conversations. In 2012, she was hired as CEO of Alive Hospice, a nonprofit chain of hospice care facilities serving more than 3,500 patients and families a year in central Tennessee. She soon realized that many Americans lived in “a crisis of denial of our own mortality,” in part because “medical institutions encourage us to never give up.”

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So she launched the SHARE simulator. Clinicians pay to participate — $350 to work through four scenarios and then watch the videos and get feedback from O’Neal or her staffers. (To give doctors more privacy, Alive deletes the footage after each session, handing them the only copy so they can review it later if they’d like.)

The work unfolds in a low-slung brick building near Nashville’s Music Row, in a room that looks like a typical hospice or hospital room, set up with a bed, a couch, a box of tissues, and a stack of travel magazines. Tiny microphones dangle from the ceiling to record audio without intruding on the intimacy of conversations. Video cameras shaped like domes are mounted on the walls.

So far, O’Neal has trained 12 doctors and 65 other clinicians, including nurses and social workers. O’Neal said some have already tweaked their communication style: Maybe they’re more comfortable with long pauses after breaking hard news to patients, or more aware of body language that may come off as too stern.

“Watching yourself, you get a feel for your posture, whether you’re using specific phrases, looking a person in the eye, or keeping focus on them,” said pulmonologist Dr. Richard Fremont. “It was helpful seeing what I thought I was doing.”

Dr. Robert Taylor, a nephrologist based in Nashville, initially found the cameras in the training room unnerving. But the actors quickly pulled him into the scenario.

“It’s awkward to see yourself,” he said, describing the experience of watching the footage later. But he noticed little things, like his posture and the inflection in his voice. When he saw the mock patients’ reactions, he realized that little shifts in his own approach could change their perception of the conversation.

Taylor said he’s been committed to frank discussions with patients ever since he recognized, early in his career, that dialysis patients rarely got a full picture of their options. Their doctors were often focused on keeping them alive. But the disease and the treatments often make them “so fatigued that it’s not the quality of life they desire,” he said. Ever since, Taylor said he’s taken pains to better communicate all options to his patients; he wanted to go through the simulator to hone that delicate art. “It can alter what you do,” he said, “but also confirm your answers.”

O’Neal said the simulator challenged other doctors’ views that a patient’s death must inevitably be viewed as a failure.

“Once you get doctors into the training, you create an opportunity for them to be vulnerable and see themselves differently,” O’Neal said. “Whether they admit to change or not, they will change.”

A political divide over end-of-life conversations

When the idea of paying doctors to talk about dying was first debated – during the early, bitter fights over the Affordable Care Act in 2009 – conservatives warned that such conversations could be a pretext for pushing the frail and elderly to give up on treatment. Former Alaska Gov. Sarah Palin said funding of end-of-life counseling amounted to a “death panel.” Iowa Sen. Chuck Grassley said it could enable “pulling the plug on grandma.”

The debate still rages: Earlier this year Iowa Rep. Steve King introduced the Protecting Life Until Natural Death Act, which would end federal reimbursements for end-of-life discussions. King has described such conversations as “intolerable to those who respect the dignity of human life.”

A spokesman for King did not respond to a STAT request for an interview.

But despite such efforts, O’Neal sees growing support for her approach on Capitol Hill. Last month, a bipartisan group of lawmakers — including Democratic Sen. Mark Warner of Virginia and Republican Sen. Johnny Isakson of Georgia — filed a bill that would provide $50 million to fund access, education, and training related to end-of-life treatment for terminally ill patients.

“Encouraging patients and their families to have these conversations with their physician helps provide peace of mind and undoubtedly increases the likelihood a patient’s care will be consistent with their wishes,” Tennessee Congressman Phil Roe, one of the bill’s sponsors, said in a statement.

O’Neal concurs: Such conversations, she said, empower patients to embrace death on their own terms — and can make those final days “the most meaningful part of the human experience.”

“If somebody’s faith is such that as long as there’s a beating heart, you keep doing everything, we’re 100 percent behind that,” she said. “But if someone says, ‘if I can’t walk to play 18 holes of golf, I’m done,’ we have to respect that as well.”

A doctor, sitting inside Alive’s training room, watches footage of his interaction with a patient and her daughter. Joon Powell for STAT

A second chance

O’Neal asks one of her staffers to turn on the big-screen TV in the simulator room so the doctor can review his performance with the 74-year-old patient. As the footage rolls, the doctor grips one of the arms of his chair, bearing a slight grin of discomfort as he watches his fumbling attempts to tell the mock patient she’s dying. Soon, he’s critiquing himself:

“I think I would have been much less polite if I wasn’t on camera …”

“I would’ve been more blunt …”

“That could’ve been done faster …”

After he’s finished, she chimes with nuggets of advice: Don’t let her chase answers. Communicate like it’s a conversation. Honesty is a form of compassion.

“It’s intimidating,” O’Neal reassures him.

The second scenario goes far better. In it, the same patient returns two weeks later with a slew of strange treatment suggestions a relative found on the internet, including a raw beet diet and blood transfusion at a clinic in Juarez, Mexico. The doctor listens intently, careful to let her finish, mindful of his body language.

After she’s done, he leans forward and steers the conversation in another direction. He makes eye contact.

Then, he says in a calm empathetic tone: “We need to start thinking ahead.”

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  • From a layman’s point of view I appreciate this. It is hard to see a loved one suffer, but in that position I myself would not want to live under a totally machine dependent life. Seeing the change of my grandmother from her independent obstinant self to a shell was hard. Seeing her after her second stroke with high dosages of medicine point to her stomache even harder. Except knowing who she was, her wants and the resulting situation, I cannot say that was the wrong choice. Just very hard to experience.

  • I just happened to finish the book “On Being Mortal”, which was written by a doctor and is all about how doctors aren’t trained for these discussions. The book has five stars on Amazon.com; I highly recommend it.

  • The more penetrating and subtle take from this article – and from the interactions between physicians and patients regarding death – is that physicians, once again, are laying bare for the world to see their narcissism and cowardice when it comes to facing an uncomfortable medical situation. They perform in exactly this same way when it comes to Preventable Medical Errors (Adverse Events). They ignore them; they refuse to acknowledge them in any way; they do not report them, whether the error was the fault of themselves or one of their colleagues. Fundamentally, they feel entitled to make errors and so they do not feel the integrity to take responsibility for them. Even when it kills someone. Most physicians are like little children and, conversely, exceptional athletes who are adults. Children, having done something that they know they shouldn’t do – and may even be dangerous to themselves or others, or damaging to property – when confronted with their culpability, will lie about it trying to squiggle out of trouble. Exceptional athletes, because they have been coddled all their life and given a pass time after time when they have failed to live up to their responsibilities, such as in the classroom or in the treatment of their peers, continue to act out as adults, where they often get the same treatment. Physicians are much the same. They have most likely been coddled because of their strong academic performance during childhood and early adulthood, and so they are used to getting their way, and feel entitled to lie or ignore the truth when a serious breech in judgment occurs. However, for a physician, much of the time when it comes to Medical Errors, their is an accompanying Egregious Breech of Ethics, due to failure to Inform.

  • The term “frank discussions” may have doctors believing they need to be more detached and less humane than they already are when they talk to patients who they see as having no chance of survival, ie, “Go home and get your affairs in order.” I am not suggesting that patients be lied to anymore than they already are with treatments that are destroying their immune systems and hastening their demise. But giving them hope when toxic treatments are started and then playing God and telling them how much time they have left can kill a person as fast as toxic treatments like chemo. Do the psychological research on how a doctor’s “expert” opinion on time left to live affects a patient.

  • Studies show that Medicare pays an exorbitant amount of money to “treat” patients in the last 30 days of life. Un necessary expenditures. Re admit to the hospital from the nursing home or hospice. Test, X rays, MRIs to see how the disease is progressing, etc. IV and nutritional support. Even ICU care so Mom or Dad gets “good care” right up to the end. It helps the family ‘feel good’ about their role in medical decision making. Decision making based on emotion and not necessarily what the patient needs or wants. The docs and hospitals encourage offering the ‘best of care’ assuming, of course, you have good insurance…….. It is about money. Not patient care.

  • As a private patient advocate, I’m confused as to why we are training doctors via simulations with trained actors? We need to use real patients and caregivers. Their stories and experiences hold a wealth of integral information, none of which can be simulated with true authenticity. Patients and caregivers are the missing piece of the healthcare ecosystem. We need to stop developing solutions, curricula, processes, trials, etc without their input and participation. There are great opportunities for transformation here. Simulations are not the answer.

    • As a med student, I 100% agree. Simulated patients help me develop an emotionless script of what to say, which is useful but has a lot of limitations. The difficultly in talking about death comes from the physician’s emotions and discomfort, which you don’t feel when you are talking to someone you know isn’t actually dying. And the actors aren’t going to fully understand the emotions of a patient facing death. Then we act completely different when we know we are being assessed, so we are acting as much as the simulated patient. My school brings in patients to talk about their experiences with disease and their bad and good experiences with physicians, but it would still be great to get real feedback from patients

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