When facing a grave illness, especially for the first time, many people are worried, frightened, and overwhelmed. They may have difficulty focusing their attention on daily tasks and experience skewed perceptions and memories based on intense emotions. This distress can also adversely affect the course and severity of disease and the success of its treatment.
As such, good communication should be every physician’s rightful concern, regardless of their area of specialty. It is fundamental to gathering information to make accurate diagnoses, transmitting instructions, monitoring treatment progress, and forming the vital relationship of care and trust that should guide all patient–physician interactions.
Unfortunately, in many surveys conducted throughout the span of many years, patients have reported worrisome levels of dissatisfaction about the quality of communication with their doctors.1 This contrasts directly with the views of many physicians, who tended to rate those same patient interactions as highly successful. Worse, many patients do not retain the information sent their way. A recent study of patients in New York revealed that, in spite of a law mandating they be informed, only 42% could correctly state their diagnoses, just 28% could list the medications they take, and only 14% could describe the common side effects of their drugs.2 It is obvious that doctors and patients are failing to connect. Many of the causes are obvious, too, but how to fix the problem is not as clear.
This two-part series will explore best practices in patient-doctor communication—both in the setting of formal instruction and in daily practice. It will also examine what can happen when communication goes wrong. Look for Part 2 in February.
The Importance of Taking Your Time
Corey Langer, MD, Director of Thoracic Oncology and Professor of Medicine at the Hospital of the University of Pennsylvania, summed up a key dynamic: “There’s an unspoken power relationship between doctors and patients. We have a knowledge base that patients and their families usually don’t have, and what we tell them can ultimately reorder their lives. So these sorts of talks are a heavy responsibility, and require the utmost sensitivity. It’s a real art form when done right.”
His years teaching and practicing have led him to believe that being a good healthcare communicator to some extent has to be intrinsic.
“You can’t necessarily teach empathy, but that’s what the job requires. It’s even harder in fields like medical oncology,” he said. “Unlike general practitioners or family internists, we deal every day with cancer—with life and death.”
With the stakes so high and emotions so raw, Dr. Langer, who also is the Editor of the ILCN, approaches patient interactions with careful preparation, sufficient time allotted, and abundant support from colleagues and staff. He schedules potentially difficult talks toward the end of the clinic day, to allow as much time as possible for questions, answers, and emotions.
“The worst thing,” he warned, “is to be short on time when you’re discussing life-altering treatments and prognosis.”
Upon hearing unsettling news, most patients immediately want some kind of certainty, often to know their exact survival chances or how much time they have left.
“Unfortunately, the fact is, there is no right answer,” Dr. Langer said. “There are median outcomes for each disease, but individuals are not medians, so I generally describe the potential best- and worst-case scenarios. If things go well, particularly in this new age of immunotherapy and targeted therapy, I tell patients they can live for several years at least. Nowadays, thanks to recent advances, almost anyone who really wants to treat their disease has a fighting chance.”
Beyond being prepared to give fact-based hope to patients, Dr. Langer is a big proponent of support networks both for patients and for their doctors.
“There is no substitute for live human interaction. If you detach emotionally, you won’t succeed. You have to engage with the patient and with family members and acknowledge their emotions, which can be grueling. That’s why it’s important not to do it alone. I have my nurse practitioners nearby, and we call in social workers or other specialties as needed. As the physician, having support staff with you is as crucial as it is for patients with their families and friends.”
— Corey Langer, MD
Director of Thoracic Oncology, University of Pennsylvania
Editor, ILCN News
“I worry about any patient who comes in unsupported or without family, particularly for their first visit, because that’s a recipe for disaster when managing their care,” he said. “When present during these discussions, family and friends can help the patient feel less anxious, and afterward, they can reinforce the doctor’s treatment recommendations and other advice.
“I find it really helpful to have family members or friends there. I want everyone to hear the questions and answers simultaneously so there’s no confusion, and I won’t leave until everyone’s questions have been addressed. This is where we establish the whole communication paradigm going forward, and it requires time and sensitivity.”
Patients’ supporters help mediate their experience, and staff and colleagues perform a similar task for the doctor.
“When it comes to imparting bad news, I’d rather do it in person. Face-to-face,” Dr. Langer said. “There is no substitute for live human interaction. If you detach emotionally, you won’t succeed. You have to engage with the patient and with family members and acknowledge their emotions, which can be grueling. That’s why it’s important not to do it alone. I have my nurse practitioners nearby, and we call in social workers or other specialties as needed. As the physician, having support staff with you is as crucial as it is for patients with their families and friends.”
A Patient’s Perspective
The elements of good communication can usually be managed in a straightforward way, but when the process breaks down for any reason, the results can be devastating—emotionally and even physically. In some cases, poor communication can lead to missed diagnoses and misunderstood treatment options, and dire consequences can follow.
Biomarker Collaborative Co-President Gina Hollenbeck, RN, BSN, has participated in patient communication from both sides, as a registered nurse and as a patient with ALK-translocated lung cancer. Ms. Hollenbeck’s only early symptom was a mild but persistent cough, but when she started losing weight, she instinctively felt something serious was afoot.
“The weight of everything hit me all at once, and I thought, ‘I have late-stage cancer that has gone outside of my lungs and encased my trachea. I’m going to die’. And then I just threw up right there in the MRI waiting room.”
— Gina Hollenbeck, RN, BSN
Co-President, Biomarker Collaborative
“That’s when I started seeing a series of doctors who misdiagnosed me with everything from gastric reflux to allergies to pulled muscles in my shoulder and things like that. When I finally paid for a chest x-ray, which was denied by the doctors, the radiologist who read it told me to see a pulmonologist immediately.”
After hearing that the wait time for a pulmonologist visit was at least 2 months, Ms. Hollenbeck was advised to go to a hospital emergency room, which she did. An MRI and subsequent biopsy confirmed her concerns, and the diagnosis felt like a gut-punch to a wife and mother in her 30s.
“The weight of everything hit me all at once, and I thought, ‘I have late-stage cancer that has gone outside of my lungs and encased my trachea. I’m going to die’. And then I just threw up right there in the MRI waiting room,” Ms. Hollenbeck said.
Soon after her diagnosis, doctors at a major teaching hospital told Ms. Hollenbeck she had only 10 months to live and no hope for an effective treatment or cure. To her, hearing that was worse than hearing the original diagnosis. She started doing independent research to look for any hope, and she discovered information about biomarkers, targeted therapies, and other recent developments. It was hopeful news, so why was this doctor so negative?
Ms. Hollenbeck remembers going back to the head of thoracic oncology and laying the research findings on his desk.
“‘How can you say I have 10 months to live,’ I asked, ‘when there are new things coming out every single day?’” she said. “He said he was only telling me what the statistics say. He thought I was a hopeless case, so I left to find someone who would work to cure my cancer. I found a doctor who told me that statistics are statistics, but my story is my own.”
Fortunately, Ms. Hollenbeck’s experience as a registered nurse taught her to question assumptions and to keep digging when things looked grim. She found a motivated team who were up to date on the latest findings to treat her illness. But the anguish she experienced as a result of short-sighted and erroneous medical advice is just one example of why progress toward more effective patient–doctor communication is so important.
“When it comes to oncology, even the x-ray technicians and everyone involved has to really listen to the patient and, in my case, understand that I’m a mother, a daughter, a wife, and a human being,” Ms. Hollenbeck said. “Clinicians need to remember that the reason we do all of this research and treatment is for people, not for organs and cells. Taking care of people is an art, and it must be a passion.”
- 1. Ha, Jennifer Fong, and Nancy Longnecker. “Doctor-patient communication: a review.” The Ochsner journal vol. 10,1 (2010): 38-43.
- 2. Harvard Health Publishing. Doctor-patient communication: A shared responsibility. August 1, 2007