Patients continue to say they want more information, so they can make informed decisions. But repeatedly, studies tell us that the patient and the family are not hearing us, not understanding us, or both.
A new study published in JAMA Oncology reveals a distinct chasm between the survival expectations of patients and their treating oncologists. Robert Gramling, MD, DSc, from University of Rochester, and colleagues surveyed 236 patients and their 38 oncologists on the patients’ 2-year survivability. There was a 68% discordant rate in the responses from patients and oncologists. Of the 161 discordant patients, 144 (89%) did not know that their predictions differed from those of their oncologists. What we have here is a failure to communicate.
Patients continue to say they want more information, so they can make informed decisions in conjunction with their oncology team. But repeatedly, studies tell us that the patient and the family are not hearing us, not understanding us, or both. We all know not to use “DocSpeak.” We know to sit down, make eye contact, check repeatedly for understanding, and pause for and acknowledge all questions.
There are always times when we think we could have done a better job. I have gone into rooms thinking, “Wow, this is going to be tough and take awhile.” But after my initial explanation, the patient and family look right back and say, “All right. That sounds OK.” It makes me pause and go through it all again just to be sure I was clear. Sometimes people have a sense of what is going on or they have researched it, and when they don’t hear any surprises they are ready to move to the next step. Then there is Mr. Tyler who has stage IV cancer-when we get new studies, he just tells me, “Doc, I trust you, just do what you think best. I don’t want to hear about the x-rays either way.” For him, I explain the treatment plan without actually saying what was read on the CT scan. It has become sort of a verbal charades. He understands his therapy; he just prefers not to discuss the details.
We also know that when people are under stress, they do not comprehend or retain information well. This is why we often have to repeat bad news or reframe its context. Nothing is more painful than having to repeat the results of a scan showing progression of disease in multiple ways to a disbelieving family. Surely you have been asked to be recorded for the benefit of the out-of-town family members. I don’t know why that makes us all nervous. Are we afraid we are going to say something wrong or untrue?
So, like all of you, I have tried to be honest and open during each encounter. But a recent event was so novel it made me think we are now entering a whole new reality.
A new patient came in last week-tragic case of a health professional in her 30s, mother to small children, with newly diagnosed stage IV cancer that is treatable but not curable as of this writing. Her spouse accompanied her. Now, I have become immune to the sight of people on their cell phones while I am in the room, but it is rarely the patient. Her spouse was texting much of the time, and the patient appeared to be distracted by her cell after the physical exam and some conversation. I very clearly mapped out the next steps. She acknowledged the plan, I answered all their questions, and off they went.
Within hours she had called the office, upset that we had not done what she thought we said we would do. I explained who would be calling her next…again. Later I received a call from the referring physician’s office nurse. Long story short-turns out the patient had been posting live on Facebook from the exam room. The problem here is that the couple were so intent on getting everything onto social media that they missed the details of our interaction. This makes me nervous because if she is “sharing” inaccurately, it misrepresents my advice and me as a professional. Is personal information no longer kept private even briefly? Don’t you need my permission to put me on your feed? Are live video feeds next?
I realize everyone has their own coping mechanisms, but collective Facebook hugs would not be my chosen support group right out of the box. Maybe some time to contemplate a life-altering situation is in order before allowing Instagram to access your photos of the chemo suite. If patients want to have meaningful, informative, and collaborative relationships with their oncologists, they need to make eye contact and give it their full concentration before rushing to post. Only by giving our interaction the attention it deserves can we minimize discordance between patients and doctors.
And no, I don’t friend patients on Facebook.