Cancer patients may be getting a bad wrap among oncologists for being “demanding” and thus responsible for high health care costs, a new study suggests.
“I'd gone around to a lot of conferences and heard many speeches and doctors constantly saying that a lot of the reasons we order these unnecessary tests is that patients demand them. But this just wasn't my experience and I hadn't seen the data,” study coauthor Ezekiel Emanuel, MD, PhD, Professor of Health Care Management and Professor of Medical Ethics and Health Policy in the Perelman School of Medicine at the University of Pennsylvania, told OT.
So he set out to explore the issue in more depth.
For the study, now online ahead of print in JAMA Oncology (doi:10.1001/jamaoncol.2014.185), Emanuel and his colleagues—Keerthi Gogineni, MD, MSHP; Katherine L. Shuman, MSN, RN; Derek Chinn; and Nicole B. Gabler, PhD, MHA—wanted to assess how often patients demand or request medical tests or treatments, what types of procedures and treatments they demand, and the clinical appropriateness of their requests. The researchers also asked how frequently clinicians complied with patient “demands.”
A total of 60 oncologists from three Philadelphia-area outpatient oncology centers were surveyed between October 2013 and June 2014. There were 5,050 patient-clinician encounters involving 3,624 patients. Overall, 440 encounters (8.7%) included a patient demand or request for medical intervention. The physicians complied with 365 of what they deemed clinically appropriate demands.
Only 50 of the 440 encounters involved a demand or request for a clinically inappropriate intervention—and clinicians complied with only seven of those 50.
Of the 440 patient demands:
- 216 were for an imaging study;
- 68 were for palliative treatments (not including chemotherapy or radiation); and
- 60 were for lab tests.
The authors reported that factors including having lung or head and neck cancer, receiving active treatments, and having a fair or poor-quality patient-clinician relationship were associated with patients making demands or requests.
The authors concluded that the myth of the demanding oncology patient is just that—a myth. In most patient-clinician encounters that included a patient demand, the demand or request was appropriate. Inappropriate demands take place in only one percent of encounters, and oncologists comply with few of them.
“We were surprised by how infrequent the demands were, and we were very surprised that most of those demands were totally clinically appropriate according to the doctors, such as requests for palliative care, or a drug for insomnia, or some pain medication,” Emanuel said.
In an accompanying editorial, titled “The Myth of the Demanding Patient” (doi:10.1001/jamaoncol.2014.185) Anthony L. Back, MD, a medical oncologist at Fred Hutchinson Cancer Research Center, wrote: “The study hypothesis—that patient demands for treatments and scans drove unnecessary costs—was spectacularly unconfirmed when using data collected from physicians themselves.”
Back, also Adjunct Associate Professor in Medical History and Ethics at the University of Washington School of Medicine and who has studied communication in his research, added in an interview that hostility from the patient tends to provoke hostility from the clinician, and that improved communication techniques could help improve the patient-doctor relationship.
“Things have improved in that most oncology programs have training in communication, but not many include what you'd call self-awareness work. This issue of when someone is hostile to you, you tend to react with hostility—That is not talked about much in the oncology community.”
He explained that things can go wrong for patients in many ways and that patient anger is often more about frustration, not so much a personal issue with a clinician. “But what happens is that the oncologist takes it personally. It's really important to take a step back and ask, is this patient really just having a bad day or week? It's important not to blame yourself.”
Communication, Communication, Communication
Also asked for his perspective, Yousuf Zafar, MD, MHS, a gastrointestinal oncologist and health services researcher at Duke Cancer Institute, said: “My first thought as I'm reading this study immediately goes to patients I've recently considered to have unreasonable demands. But when I think about that particular encounter, the more I think about it, the more I realize it wasn't about an unreasonable demand but rather a communication issue.
“Something I've tried to focus on is to understand what the patient's goals are. For example, a demand from a patient wanting more chemotherapy near the end of life probably stems from a goal to live longer or live better or have a better quality of life. If we focus on the end—i.e., feeling better—rather than on the means—chemotherapy—then the communication will improve.”
A critical part of fellowship training should involve communication, he continued. “The majority of what we do day to day as oncologists is communicating with patients, educating, and making shared decisions in terms of treatments.”
Zafar co-leads a monthly meeting with another colleague to discuss cases where communication interactions have been difficult with patients or families. The goal is to help understand the root causes of why those reactions occur, to help provide fellows with better skills.
“I think communication is a skill, and just like any other skill you can learn it. You can learn how to do bone marrow biopsy, you can learn how to manage chemotherapy toxicities, and we can learn how to communicate.”
Back said patients can also learn to “own” their feelings and express them, which will help the clinician-patient relationship. “They can say, ‘I am really frustrated and irritable,’ because that helps let the doctor or nurse caring for them be more aware. If a patient says, ‘It just feels like we're not talking openly here,’ I think most doctors would step up to the plate and communicate better.”
Emanuel summed up: “We can't blame the patients for high health care costs. The other message is that doctors have it in their power to change the nature of the relationship with their patients.”