Kristine M. Conner
OncoLink Medical Correspondent
Last Modified: May 23, 2000
On Monday morning, ASCO tested new ground by broadcasting its first-ever satellite-fed live session on patient-physician communication to more than 425 hospitals and medical centers nationwide. The session itself, which was attended by a few hundred oncologists and other health care professionals, had a decidedly different feel than most of the scientific sessions being held this week. Not only did it elicit audience feedback through use of keypad technology and by taking questions from callers nationwide, but it also focused on what co-chair Dean Gesme, MD, of Oncology Associates of Cedar Rapids, Iowa, called the art of medicine -- focusing on the person rather than the science of the disease.
"The practice of medicine is both an art and a science," said Dr. Gesme as he introduced the interactive session. "We're all here at ASCO primarily to learn the science. But the true art of it isn't really addressed in our practice," he said, noting that most physicians receive no formal training in how to communicate with patients.
The nearly two-and-a-half-hour forum, which was designed to help remedy that gap, assembled a panel of experts who were able to give concrete and practical advice about how oncologists might better communicate with their patients. Moderated by Susan Dentzer of the PBS News Hour with Jim Lehrer and co-chaired by Dr. Gesme and Diane Blum, ACSW, of Cancer Care, the session was a mix of concrete advice, anecdotes, New Yorker cartoons, film and video clips, and perhaps most valuable, extended commentary from a patient named Julie Goldman, a Ph.D. candidate in anthropology at Harvard undergoing treatment for stage 4 breast cancer, and her medical oncologist, Dr. Lidia Schapira of Beth Israel Deaconess Medical Center in Boston, who have formed a relationship over the course of six years. Other panelists included Dr. Walter F. Baile, Chief of Psychiatry at MD Anderson Cancer Center, Dr. Robert Buckman of Toronto-Sunnybrook Research Center, cancer survivor and oncology nurse Susan Leigh of Tucson, and adult oncology nurse Barbara Rogers of Fox Chase Cancer Center.
Even though Dr. Gesme began by stressing communication as an art form, he used real science to back up the session's claims about its importance. "We're not listening to patients," he said. "We're jumping right into treatment-related information . . . How many times has something come up as your patient was walking out the door, such as a new pain or inability to sleep?" As an example, he cited a 1984 study which found that in 69% of office visits, the physician interrupted the patient within 18 seconds. A 1999 update of the same study, published in the Journal of the American Medical Association, found that average time to interruption was still 23 seconds or fewer. Dr. Gesme cited another study, published in the Journal of Clinical Oncology in 1999, titled "Can Forty Seconds of Compassion Reduce Patient Anxiety?", which suggested that even the smallest gestures of compassion can make a real difference in the patient experience.
Diane Blum of Cancer Care then showed two clips from the 1990 film The Doctor, in which William Hurt plays a thoracic surgeon who finds the tables turned on him when he develops a laryngeal tumor. Audience members first saw William Hurt's character act aloof, distant, and dismissive as he dealt with a female patient concerned about a surgical scar. They were then shown a second clip in which Hurt himself is treated in precisely the same way by a female doctor: she is brusque, businesslike, and does not explain what sh's doing as she conducts an uncomfortable throat examination.
These two clips, which met with some nervous laughter from the audience, brought the issue at hand into sharp focus. An informal poll conducted by keypad showed that only a small percentage of the audience had received any formal training in communication, and most learned by observing others. And yet, as Dr. Gesme also noted by way of "hard numbers," a 1998 issue of the Journal of Clinical Oncology suggested that oncologists will break bad news roughly 200,000 times in their career. The forum's central theme was that better communication skills can be taught and they can be learned. And the benefit, noted Dr. Baile of M.D. Anderson, will be better outcomes in many areas: increased patient and physician satisfaction, better psychological adjustment and decision-making by the patient, increase compliance and cooperation by the patient, improved continuity of care, and decreased physician stress and burnout.
So how to do it?
"No Magic Talisman"
"There is no magic talisman," said Dr. Buckman of Toronto-Sunnybrook in Canada, who has created a series of videos that address this very subject. "There are genuine, practical strategies you can use." Dr. Buckman recommended what he refers to as the SPIKES approach:
Of course, such a simple-sounding mnemonic device is anything but simple when dealing with real people and real emotions. Dr. Buckman acknowledged the complexity of real life by showing two video clips of himself actually using such an approach, first with a woman who presented with back pain two years after being treated for cancer, and second with the son of a non-English-speaking Hispanic woman who did not want his mother to be told anything about her breast cancer. In discussing both clips, he emphasized the importance of always starting where the patient is. Figure out what they are perceiving, what their concerns are, and move from there.
Having a consistent strategy like SPIKES, Dr. Buckman emphasized, is essential at a time of high stress and anxiety for both patient and physician. But there is also the need to adjust to the wants and needs of the individual. For example, he suggested asking patients about how involved they wish to be in the decision-making. Some people want to be involved; others want to be guided by strong physician recommendations.
A good portion of the discussion on communication skills focused on audience members' concerns about delivering honest information without taking away a sense of hope. Dr. Buckman questioned what he called the "false dichotomy between hope and hopelessness" -- the sense that hope is some kind of object, a little black box, that a person either does or does not have. Nurse Barbara Rogers suggested that participants consider a definition of hopelessness used by the National Coalition for Cancer Survivorship: "Hopelessness is inaction in the face of a threat." As she and other panelists noted, the hope of an out-and-out cure may be lost, but offering to help a patient deal with symptoms, and live the life they want to lead, is also a way of offering hope.
The real skill, added Dr. Schapira of Beth Israel Deaconess, is helping patients see that they may need to modify what they are wishing for. They may have unrealistic goals that need to be "transformed into something achievable," as she put it, and they may need help overcoming denial. "Hope" will then take on a new definition as they adjust their goals. Her patient Julie Goldman, who was diagnosed with breast cancer at the age of 31 in 1994 that eventually spread to her liver and lungs, expressed gratitude for what she called the "signposts" that Dr. Schapira would provide in their conversations. Goldman said she knew when treatment for cure turned into treatment for quality of life, but there was still hope nonetheless -- hope in her teaching of students at Harvard, hope in having time with her family, even hope in electing to abandon chemotherapy treatment that had become unbearable. Goldman described her classroom at Harvard as her "cancer-free zone" where she could remain focused on the work she loves so much.
The forum also dealt with practical barriers to communication, including time constraints and social and cultural issues. Diana Blum of Cancer Care explained that, during their preparation meetings leading up to ASCO, panelists actually had generated a list of twenty-five such barriers, but decided to focus their attention on these two. Based on her own experience, cancer survivor and oncology nurse Susan Leigh recommended what she saw as a simple tactic of keeping patients informed when they are kept waiting for an appointment. "I'm always struck by how vulnerable I feel during that time," she noted. Just having someone check in with her could make all the difference in the world. She also suggested using patients' waiting time as a part of one strategy for improved communication.
"Put a tablet and pencil in your waiting and exam rooms," Leigh suggested. "Put out the NCCS booklet on communicating with your doctor as well." Not only would this give the patient something to do, but it actually might improve the encounter that eventually does occur.
Dr. Walter Baile seconded the importance of keeping patients informed when time is short, expressing wonderment that the medical community has not adopted the consumer-friendly strategies of other businesses. "When I go to pick up my car and I have to wait, they offer me a Coke," he said in amazement.
Panelists and participants also discussed how social and cultural difference can affect communication, particularly with those cultures in which the family unit is stronger and more interdependent than what the physician usually encounters. Dr. Buckman's video clip of himself dealing with the Latino man worried about his mother, who did not speak English, was the perfect example of the type of situation that can arise. The son, convinced that the shock of breast cancer "would kill" his mother, angrily instructed Dr. Buckman to speak only with him. Once again, Dr. Buckman advised that one start by acknowledging the family member's position without judging, forming an alliance as best as one can, and then approaching the patient together and adhering to her wishes. If the son had been representing his mother's wishes accurately, then this would have to be the course of action, said Dr. Buckman.
This example pointed to another theme that emerged over the course of the two-hour session: the wishes expressed by the patient must be paramount.
Constructing a Narrative
By including Julie Goldman, the Harvard Ph.D. candidate who has been dealing with breast cancer for nearly six years, the forum gave voice to a real patient -- which was exactly in line with the advice the panel of experts was giving to oncologists in the audience. Over the course of the two-hour forum, Goldman spoke eloquently and movingly about what effective communication can mean to someone who has been told that she is dying. Two years ago, Goldman prepared for death in a hospice before responding to a fourth-line attempt at chemotherapy. She had elected to stop treatment before that last attempt because she wanted to preserve the quality of life she had left.
In such a dire situation, Goldman explained, communication does make all the difference in the world. She compared effective communication to a game of catch in which the physician gradually learns what the patient can handle. "With each throw, you gauge how to throw the ball the next time," she said, noting that the physician learns as much from the patient as the patient does from the physician. This back-and-forth creates a sense of cooperation that can provide at least some comfort.
Goldman acknowledged the complexity and difficulty of the oncologist's situation. "You first have to break bad news and then deliver incredibly toxic treatments, things like chemotherapy, which can make the patient's fingernails fee nauseous." But, she added, pain is one thing -- suffering is quite another. And good communication with the doctor can alleviate some of the suffering: "It provides the support beams under the roller coaster," she noted.
Goldman and her doctor, Lidia Schapira, recently spent three hours filming themselves talking about how the history and nature of their communications as physician and patient. Audience members were riveted as they watched four minutes' worth of excerpts from this unscripted film, titled One Story, Two Voices, as a demonstration of what the doctor-patient relationship can be. During one portion, each woman takes turns talking about Goldman's decision to stop chemotherapy treatment before she entered the hospice, and what that meant to each of them. Goldman expressed the fear that Dr. Schapira might have thought that she was rejecting not just the treatment, but her care and medical knowledge. Dr. Schapira said that she had not felt this way; rather, she knew that Goldman was adjusting her expectations and realizing that her hope now lay in living her life the way she wanted to, rather than curing the cancer. The point of such reflections and the video itself, as Goldman commented after the excerpt was shown, is that doctor and patient must create a shared story. "We share the history," Goldman stressed. "And at the low points, the bad news times, communication mattered."
These excerpts provided a perfect lead-in for the central thought with which the forum left physicians -- that is, to consider how they can integrate such a narrative-based model with evidence-based models, which are so much in evidence at the poster sessions and presentations here at ASCO. Diane Blum closed the forum by reminding physicians that every session they would attend here in New Orleans, while admittedly scientific, was also driven by a desire to help people.