The Art and Science of Talking About End-of-Life Care

Toby G. Campbell, MD, MSCI, is a thoracic oncologist and palliative care physician from the University of Wisconsin Carbone Cancer Center. He began his talk during Saturday’s final session of the 2019 National Comprehensive Cancer Network (NCCN) Annual Conference with a confession:

“I cannot practice palliative [care] and oncology very effectively at the same time,” he said.

There are moments, Campbell said, when “there is some blend and some blur” between his specialties, but the skills sets are distinctly different. Palliative care takes a different path from oncology and defines success differently.

The goal of his talk, “Navigating the Transition to End of Life Care in Patients With Cancer,” was to help physicians take the dry language of the NCCN palliative care recommendation to help patients “develop prognostic awareness,” and turn that into what Campbell called “tools in the tool kit.”

Ultimately, he said, some patients will need a recommendation for hospice, and physicians need to know how to have that conversation. Historically, health systems in the United States have fared poorly at this; the 2014 Institute of Medicine report, Dying in America, painted a bleak picture of fragmented care, overburdened families, and care that was often not what the patient wanted. CMS’ Oncology Care Model seeks to address this by requiring every cancer patient to have a survivorship care plan. But the challenge of the doctor—patient interaction remains, because so many physicians were trained in an era when medical schools did not address end-of-life issues.

If the goal is “prognostic awareness,” Campbell said the conversation must start early. “If we’re going to be talking about dying,” he said. “It really is a conversation that’s best done in bits and pieces.”

Work at the University of Wisconsin is developing phrases to open the door. Phrases are tested—doctors even practices with actors—and once they are fine-tuned, the best methods are studied to measure their effectiveness. Campbell and his colleagues have learned that success starts by laying the groundwork early, because success can have a variety of outcomes.

He showed the audience a slide that plotted out a schedule of 8 appointments, which he said would give a physician a total of 4 hours to discuss palliative care. But, more critically, each appointment affords an opportunity to start the conversation at home, during the “spaces in between,” when the real thinking about goals and values takes place. “This will assist in the eventual conversation,” he said.

Add the question to appointments

Campbell said the pattern of the typical oncology appointment is divided into 3 parts: discussions of symptoms, scans, and treatment. Analyses of conversations in the middle portion of the appointment, when physicians deliver news that the scans are “good,” “stable,” or “bad,” show that this is the shortest part of the conversation; when news is bad, the treatment segment expands significantly.

Here, Campbell said, is where clinicians must use what he called the blend, and “create the space to talk about dying.” The method developed at the University of Wisconsin adds a step between the “scan,” and “treatment” portion of the appointment to ask, “Would you like to talk about what that means?”

The question should be asked even if the news is good: because if treatment is working, it can extend life, but there could be side effects. The idea of shared decision making is critical, so that patients and families always understand available options.

Use paper and pen homework

The development of an “Oncology Talk Tool” is a simple paper-and-pencil chart that options for patients and families to consider when 1 option is to stop treatment. Campbell showed samples of charts that clinicians created that included estimated of odds, “0/10” for stopping treatment, followed by “1/10” for a chemotherapy option, and “????” for entering a clinical trial. This “best/case, worst/case” scenario gives patients the critical information to take home and discuss with their families, Campbell said. “This is entirely about the spaces in between,” he said.

In a study that followed up at patients’ homes, even after some had died, many families still had the charts. “No one said, ‘I hated that piece of paper they gave me,’” Campbell said.

With hospice, the order matters

Campbell presented a framework for presenting hospice that begins with telling the patient, “I don’t have any more good treatment options left.” Instead of saying the word, “hospice,” describe the nursing and social work services it offers. He recommended that physicians recommend the services first, as way to give them care to relieve pain and keep them out of the emergency department, and then say, “It’s called hospice.”

Through testing, he said, “It appears the second strategy is more effective.”

Campbell encouraged physicians to get the patient’s buy-in, reminding them of statements made in previous conversations of their desire to manage pain at home and gaining their agreement to not pursue more treatment. The phrase, “How does that sound to you?” is important.

Avoid euphemisms, he said. “The gold standard is to use the word 'dying.'”

The goal is to present hospice as a service only available to people in their circumstances, who want to “focus on living with the time remaining.” Time spent at home with family, in as much comfort as possible as a conscious choice, helps patients realize they have what they need, Campbell said.