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When We Talk About Dying

Palliative care physician Jennifer Olenik, MD, (left) and Nina O’Connor, MD, chief of Palliative Care, talk through the Serious Illness Conversation Guide, a questionnaire developed by Adriadne Labs, that steers doctors through a talk with patients about their priorities and goals. O’Connor recently launched the program at Penn Medicine and Olenik completed the training this past winter.

“Are you afraid to die?”

It’s not a question that most people hear from their doctors. But for patients with serious illnesses, inquiring about their fears and anxieties for the future is important, says Rachel Klinedinst, DNP, CRNP, an advanced practice manager of Palliative Care at the Hospital of University of Pennsylvania and Penn Presbyterian Medical Center.

“Patients never stop thanking me for asking,” she told a group of nurses and doctors who attended a training for Penn Medicine’s Serious Illness Care Program in December.

During the half-day program, trainees were guided through how to have frank, meaningful conversations with patients who have serious illnesses, such as cancer, dementia, or chronic disorders. The talks were not intended to map out specific treatment plans or advanced directives, necessarily, but rather to focus on a patient’s personal wishes, priorities, and values.

The Serious Illness Conversation Guide includes questions like, “What abilities are so critical to your life that you can’t imagine living without them?” and “What is your understanding now of where you are with your illness?” Research has shown that patients who think and discuss these kinds of open-ended, personal topics are more likely to receive the care they want, feel less distress, and report a better quality of life.

“It’s not about giving clinical information,” Klinedinst reminded her trainees. “It’s about listening.”

Filling a Gap in End-of-Life Care

While working with cancer patients four years ago, Nina O’Connor, MD, chief of Palliative Care and chief medical officer of Penn Medicine at Home, realized the need for this type of program when she saw how seldom doctors were documenting patients’ life goals and personal values.

“Traditionally, doctors learn how to treat diseases, not how to talk to patients about their outside, non-medical priorities,” O’Connor said. “When doctors don’t have the specific skillset needed to talk about end-of-life choices, they get anxious, and the patients are anxious, and then the conversations don’t happen.”

Even when they do happen, it’s often too late — once a patient is already hospitalized and very sick.

“At that point, they may have lost the opportunity to reunite with loved ones or to make practical plans, like hospice care or even funeral arrangements,” she said.

While palliative care doctors are trained to provide extra support to this patient population, a shortage of clinicians in the specialty means that these conversations should extend to primary care doctors, oncologists, and others, she said.

After researching a number of training programs, O’Connor settled on the Serious Illness Care Program, an initiative created by Adriadne Labs, which is a joint health system innovation center at Brigham and Women’s Hospital and the Harvard T.H. Chan School of Public Health. 

At the center of the program is the Serious Illness Conversation Guide, which fits on to a single, postcard-sized laminated paper and offers clinicians specific language to ask patients. The multi-component program also includes training and reference materials, as well as a system for documenting the conversations into the electronic health record.

The goal for Penn Medicine, O’Connor said, is for 100 percent of patients with a serious illness in the health system to have a documented conversation, in their medical record, about their wishes, priorities, and values.

Training Physicians and Nurses

During the December training session for the program, trainees broke off into groups of five or six. Klinedinst led a small group of clinicians in a role play exercise.

“The benefit of role play is that you get to practice, so that it’s not the first time you say these words aloud,” she said. “This is a chance to practice and screw up. Try out language you wouldn’t usually use.”

Katrina Le Blanc, an administrative and program coordinator in Palliative Care, acted as a patient with lung cancer. Jennifer Olenik, MD, an assistant professor of Clinical Medicine, played the role of her physician.

“I do want to talk to you about what’s ahead of your illness and do some thinking about what’s important to you, so I make sure the care we’re giving you is the care you want,” Olenik asked. “Is that OK with you?”

The conversation that followed delved into the patient’s faith, family, and priorities.

Klinedinst stopped the pair halfway through.

“She kind of threw you a curveball there, which happens a lot, when patients sort of don’t hear or understand the question the way we’re asking,” Klinedinst said. “You gave her examples without leading her down a certain path, which opened the door to giving you important information about what she wants.”

Reducing Patient and Caregiver Anxiety

So far, more than 400 Penn Medicine clinicians have received Serious Illness Care training, and over 5,500 patients have had a Serious Illness Conversation documented in Penn Chart as a result of the program.

But after those conversations take place, what happens next? Do they really make a difference in improving end-of-life care?

According to O’Connor, those notes become “a foundation” for the patient’s treatment plan. Sometimes the treatment decisions are immediate – a patient who expresses that he never wants to be hospitalized again, for instance, may decide to forgo chemotherapy, or a patient who prioritizes travel abroad may opt for a care plan that allows her to accomplish that goal.

“Other times, there is no immediate change in the treatment plan, but at least now you know what is important to someone as they’re getting sicker, so that you patients, families, and treatment teams can continue more conversations down the road,” O’Connor said. “It opens up those lines of communication.”

In a 2019 study conducted at the Dana-Farber Cancer Institute, researchers followed 278 patients with advanced cancer. Half of patients were enrolled in the Serious Illness Care Program and half were not. The research found that among those in the program, moderate to severe anxiety was only half as common in the control group, and that improvement persisted for months. On the other hand, the study did not find any significant effects on reducing unwanted or unhelpful medical measures, though the authors noted that this could be due to a small sample size and small number of patients who actually died during the study.

At Penn, O’Connor and her team have begun to compile satisfaction surveys from patients who have participated in the serious illness program. She says the preliminary results, which she expects to be published within the next year, are promising.

“We’ve found, for the vast majority of patients, having a serious illness conversation makes them feel closer to their provider, more in control of their own illness, and they’re able to do practical things as a result, like talk to their family members or complete their living will,” O’Connor said. “When these conversations happen early enough, a patient is able to use that discussion to make important decisions about how they want to live the rest of their life.”

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