Training Providers and Patients to Talk about End-of-Life Care
It has been observed and documented widely; most doctors and patients do not want to talk about death and dying. But failing to discuss transitions of care—from active cancer treatment to end-of-life care once treatment options have been exhausted—can leave doctors unsure of what a patient truly wants at the end of his or her life. And failing to receive end-of-life care in line with their values and wishes can cause both patients and their families great distress.
We think that by focusing on the emotional content of conversations, all decision-making will go better.
An article published in Cancer based on findings from the NCI-funded Cancer Care Outcomes Research and Surveillance Consortium (CanCORS) reported that most doctors would not initiate discussions about end-of-life care options with terminally ill patients who still felt well. Instead they waited for symptoms or until there were no more cancer treatments to offer. Physician discomfort with these discussions contributed to the unlikelihood of their occurrence; doctors who did not feel confident in the realm of end-of-life discussions were less likely to initiate them, until the last minute.
“These are difficult conversations,” said Dr. Ann O’Mara, head of Palliative Care Research in NCI’s Division of Cancer Prevention. “And most physicians aren’t trained to have these conversations and don’t feel comfortable having them.
“While we have to draw an emotional line with patients—you can’t get so involved that you lose sight of being a clinician—we still need to have empathy,” she continued. “We have too many patients saying that their doctors don’t understand what they’re going through, or don’t want to understand.”
Re-Learning How to Talk
Researchers have developed a number of innovative, evidence-based programs to help both doctors and patients improve their communication skills and grow comfortable with discussions about moving from cancer treatment to end-of-life care.
Dr. Anthony Back, professor of medicine at the University of Washington, Seattle, developed the Oncotalk program to fill in an important element that he and his colleagues saw was missing in medical oncology fellows’ training: how to speak with empathy.
“Learning to communicate really requires a different kind of teaching, a different kind of teacher, and a different kind of learning experience than most of what is learned in medical school, which is a didactic, you-listen-to-the-experts kind of thing,” explained Dr. Back. “That’s not how you become a better communicator.”
Dr. Back and his colleagues teach Oncotalk in an intensive retreat format over the course of 4 days each year, covering issues in cancer communication from diagnosis to end of life: fundamental communication skills, giving bad news, managing transitions to palliative care when chemotherapy is failing, talking about advance care plans and do-not-resuscitate orders, discussing treatment options and informed consent, conducting a family conference, handling requests for therapies that a doctor feels are futile, and cultivating communication skills.
“We developed Oncotalk using a theory of communication tasks that goes all along the cancer trajectory, so clinicians will start to think of these different tasks in different ways, and so that they approach patients in a way that’s more specific to where they are in their cancer journey,” said Dr. Back. “We frame the job of the doctor as a guide or a coach; it’s not just about giving bad news.”
In a peer-reviewed validation of the program, which enrolls about 40 fellows per year, participants demonstrated more than 10 new communication skills in simulated patient encounters after the workshop than they displayed before participation.
“I feel less flustered and my words are less tangled; I can focus on the person across from me and find out what they need from me in that moment,” wrote Dr. Lanie K. Francis in an article published in the Journal of Clinical Oncology after completing an Oncotalk retreat.
In collaboration with Dr. J. Randall Curtis, also from the University of Washington, Dr. Back is now performing a randomized study of an Oncotalk-based curriculum for internal medicine residents and advance-practice nurses, broken up into half-day training sessions, to see whether the skills can be effectively taught outside the intensive-retreat format, and to quantitatively measure their impact on patients’ satisfaction with their end-of-life care.
Dr. James Tulsky, director of the Center for Palliative Care at Duke University and an Oncotalk faculty member, has developed a Web-based video training course to increase oncologists’ use of empathic language when they are talking with their patients. “Patients want physicians to listen to them, to understand them; they want them to be in tune with their concerns,” he said.
He and his colleagues performed a preliminary study of 400 doctor-patient conversations and found an important emotional component of this communication to be largely missing. “When patients raised what we call empathic opportunities—these moments where they state something that has emotional weight to it, something that demands an emotional response—physicians responded using empathic language only about a quarter of the time,” he recounted.
Dr. Tulsky then tested their Studying Communication in Oncologist Patient Encounters (SCOPE) intervention in a clinical trial in which 48 oncologists were randomly assigned to either personalized computer-based training—in addressing patients’ emotional concerns and communicating bad news and prognoses—or a control group who received no further training. After an average exposure to the training material of just over an hour, oncologists who received the training were more than twice as likely compared with the control group to use empathic language when talking to their patients, measured in recorded conversations after the intervention.
The researchers led by Dr. Tulsky are now performing a clinical trial taking the same principles and using them with patients, “to help them better get their emotional needs met when they see their oncologists,” he said.
The Patients’ Perspective
“We can get doctors to better respond to emotional cues, but at the same time, it seems like patients have been socialized not to even bring these issues up, or they just don’t know how to,” explained Dr. Tulsky. “But there’s a lot of data that shows that the more that people can express what’s on their minds, the more likely they are to feel better and decrease their stress.”
The patient-centered intervention, called Communication in Oncologist Patient Encounters (COPE), uses a Web-based intervention that is similar to SCOPE. With COPE, patients can review audio recordings of their encounters with their oncologists as well as videotaped examples of communication skills they can use with their doctors.
In the COPE trial, after reviewing the videos, patients will then have their next visit with their oncologist recorded and discussed with the investigators. “We’ll try to highlight where they used the skills we’re teaching, and where they could have tried to use them but didn’t,” explained Dr. Tulsky.
The ongoing COPE trial is enrolling 400 patients with advanced cancer into four study arms: a control group with internet access alone; the COPE intervention; an interactive, internet-based communication system called CHESS; or COPE plus CHESS. Developed by the University of Wisconsin’s Center of Excellence in Cancer Communications Research, CHESS (Comprehensive Health Enhancement Support System) was designed to help individuals cope with a health crisis or medical concern, and includes information, social support, and decision-making and problem-solving tools.
The researchers will measure changes in participants’ willingness to express emotional concerns and request emotional support during their doctor-patient visits, as well as how they feel after their appointments. “We think that by focusing on the emotional content of conversations, all decision-making will go better,” said Dr. Tulsky.