Photo by Gordon Todd
Dr. Tony Back recently had a conversation with one of his patients, a nurse with recurring gastric cancer. After awhile, he gently asked her about how much she was thinking about dying. Though the patient understood her prognosis long before this discussion, she wept and struggled to speak. Faced with tears, many doctors might have abruptly ended the dialogue or avoided it in the first place, but not Back. He waited until she was ready to continue, and they had a productive discussion that helped him understand her desires and plan her care.
As a crusader for better communication between doctors and patients, Back, a Seattle Cancer Care Alliance (SCCA) oncologist, said he believes such empathetic conversations should be the norm at the Hutchinson Center and everywhere physicians face the difficult task of conveying poor test results, breaking bad news and discussing end-of-life care with patients and their families.
It wasn't a role Back planned. He was attending college when tragedy struck his family. His mother died of aplastic anemia, a bone-marrow disorder. Her death led him to pursue medicine at Harvard University. Returning to his Northwest roots, he did his residency at the University of Washington and completed an oncology fellowship at the Center. "My mom's death oriented me to this whole field in a way that I don't think I would have been otherwise," Back said. "That's part of her legacy."
What's important most
About 10 years ago — before he had much training in end-of-life conversations — Back was caring for a terminally ill patient at the Veterans Affairs Puget Sound Health Care System. The woman tried to talk to her young daughter about dying, but the girl ran out of the room, crying. Back followed the child. "I had no idea what to say, but we had a very basic conversation about her fears and what was most important to her," he said. After a little while, she said, 'Well, you know, the most important thing is to go in and love my mommy.' And she went back to her mother.
"Later, the patient and I were talking about whether she was ready to say goodbye to her family — which is the hardest possible thing — and she said to me, 'If I say goodbye today, what happens if I live until tomorrow?' It really taught me how awkward it is to be at the very end of your life. It impressed on me that this needed to get studied. These conversations were too important to just wing it."
Instead of shying away from what was difficult, Back discovered his passion. A career-development award from the Soros Foundation's Project on Death in America enabled him to pursue further training and help other physicians learn to communicate better with their patients. "I'm really interested in how communication works as an interface between the technological and human sides of medicine," Back said. "The intersection of science and people is what oncology is about to me."
Back joined the SCCA's gastrointestinal cancer-care team about a year ago. He spends 50 percent of his time with patients and the other half pursuing research. In addition to teaching UW medical students about how to deal with patients with life-threatening illnesses, Back leads numerous studies related to doctor-patient communication and end-of-life and supportive care.
Training oncology fellows
To better understand how to teach doctors about communication, Back and colleagues throughout the United States are halfway through leading a four-year, National Cancer Institute (NCI)-funded research study that involves intensive communication-skills training for medical oncology fellows. At these four-day retreats, the doctors work in small groups with actors who portray cancer patients. The interactive skill-building helps with some of the most challenging situations faced by oncologists, including giving bad news, talking with family members and discussing issues related to palliative rather than curative care. Skill improvement is analyzed through questionnaires and audiotapes of the sessions.
Even though an oncologist will deliver bad news thousands of times in a career, most have never had any formal training in this area, and the majority of fellowship programs do not provide more than the occasional lecture about communication.
"All physicians learn how to take histories in medical school, but they don't often get more training in how to have difficult conversations," Back said. "Even if you only see patients part-time, you probably give bad news more than 10,000 times in your career. Ten thousand times and we're not teaching people how to do it? That's what I want to change."
Back often encounters misperceptions about communicating. "One myth is that you're either born with the skill or you're not, and that's actually not true. There are a lot of studies that show doctors get better with training," he said. "It's like any other skill. If you pay attention to it and work on it, you can improve."
"The other myth is that avoiding any kind of talk about anything emotional will be better and that we should just be completely objective and scientific when we're talking to patients."
There is a role for science and objectivity in discussions with patients, Back acknowledges, but there is also a need to address the whole person, he says. "Especially at a place like the Hutch, we need to combine the best of science with the best of communication skills. In order for people to benefit from the science here, they've got to be in a place where they feel understood so they can listen to complicated explanations and make decisions about them."
About five years ago, Back became involved in a national initiative, Education in Palliative and End-of-Life Care (EPEC), designed to raise awareness about the importance of supportive care among health care professionals. He is a master facilitator for EPEC's courses, including new coursework aimed at oncologists.
Improved communication improves care for patients, Back believes. "If you look at accounts of what it's like to get cancer care, there are a lot of comments about how distant doctors are, especially oncologists. I think there are many oncologists who don't want to talk about things that might be more emotionally-loaded," he said.
"When I train residents and fellows, they often read the patients' distress as something they did when that's really not the case. The patient is upset because bad stuff is happening to them," Back said. "It's a huge service for a doctor to still be there for the patient, even when they're upset, and not pretend that they shouldn't feel that way or try to minimize their feelings."
Becoming skilled at empathetic communication, Back says, fosters greater efficiency. "Doctors worry that these kinds of conversations take too much time, but it's an investment upfront that pays off later. If you can spend the time with the patient to make sure you know what their concerns are, you can address their concerns, and the patient doesn't keep asking questions because they know that they have been heard." he said. "So it actually makes you more efficient."
More satisfaction, less burnout
Better communication also increases job satisfaction. Studies have found that more than half of oncologists report burnout in their professional lives, in part from the emotional strain of dealing with very ill patients and their families. Oncologists must adapt to an often-changing role from curer to life-prolonger to comforter if therapy does not work.
"Burnout is a big occupational hazard for oncologists," Back said. "There are a number of studies that show communication training and being a better communicator actually reduces burnout."
Dodging clear conversations about prognosis was long thought to be in the patient's best interest. As recently as the 1960s, it was not unusual for cancer patients to die without the word "cancer" once being uttered in their hearing, not even by their doctors. Avoiding the subject was presumed to be merciful, whereas honesty was simply hope-killing.
Watching his mother suffer and his family struggle with their fears, Back recalls her doctor as caring, but very evasive about her prognosis. He doesn't believe such ambiguity serves patients well. "I try to teach doctors not to guess at what people are thinking, but to actually figure out ways to ask. Different patients want and need different things. Instead of just being vague, you can usually ask them in a subtle way. Most of the time, people have a sense of what they need, and they'll tell you," he said.
Back says doctors need to watch for cues from their patients as they give information. "Even though patients ask for and truly want to know all of the facts about their illness, if you give it to them, it can still be overwhelming," he said. "You need to know how give it in pieces and how to check in with people about how distressed they are. Even the best communication doesn't eliminate the chance that someone could be upset. These are life-changing events, so a certain amount of upset is pretty normal, right"?
"The issue is not how to avoid getting the patient upset, but how to handle it. You want to hang in there and not just withdraw as a doctor."
In collaboration with researchers at Dana-Farber Cancer Institute, Back is in the middle of a four-year study looking at how doctors communicate prognosis with prospective transplant patients. The consultations are audiotaped, and patients are asked about their understanding, decision-making, anxiety, depression and other mood issues following the conversations. The study is funded by NCI.
In another project, sponsored by the National Institutes of Health, Back is working with Dr. Randy Curtis of Harborview Medical Center to look at how doctors and patients talk about hope. "Through interviews, we're finding out how it's discussed and how that affects the amount of information doctors give or how they 'package' it," he said. "We're trying to figure out better ways for doctors to balance the need for both hope and information."
Back has also tackled another difficult area for doctors who treat terminally ill patients — the final conversation. He finds that physicians have the same concerns as his patient did about saying goodbye to her family. Many don't know how or when to say parting words to their patients, so they often don't. Back wrote about this common occurrence, which may leave patients feeling abandoned in their final days, in the April issue of Annals of Internal Medicine. Studies show that dying patients say one element of a "good death" is the feeling they've contributed to others. Back teaches doctors that part of saying goodbye to patients is acknowledging "that you've learned something and your work together has meant something to you."
While Back is making inroads in sharing the gospel of better doctor-patient dialogue, he knows he has a long way to go. "I would like to see a whole culture change in oncology, where it's much more oriented toward the patient experience," he said. "I know science is really complicated and just getting it to patients is a huge job. But I want to train people who are terrific scientists to also be terrific with patients."