Many years of taking instruction from tennis pros, golf pros, and horse trainers has made me a good listener. Always working to improve, I listen and do what they say to do. Likely, most doctors would say they are good listeners as well. It is an essential skill when studying and practicing medicine. But under stress of limited time or a patient not responding to treatment—maybe our ability suffers a bit. Perhaps we are listening but also talking and not checking for understanding.
You can tell when your patient is listening and comprehending. They are engaged, make eye contact, nod their head. They may repeat back to you what you just explained in order to confirm information.
So, if we are all trying to do the right thing, why isn’t it helping improve patient care and outcomes?
A September 9 study in JAMA Oncology by Epstein et al looking at oncologist-patient communication showed that even with improved communication as a result of training groups, they were unable to demonstrate any significant effect on secondary outcomes such as patient-physician relationships, shared understanding of prognosis, quality of life, and use of aggressive care or hospice in the last 30 days of life. They were communicating well but comprehension was lacking. There was still a disconnect between what the doctor was saying and how the patient understood that information and its effect on their situation.
My theory is that we say the right things but our body language and vocal cues belie the sentences we speak. We say there is no more effective treatment, but not with honest conviction. We say we recommend hospice care to maintain pain and symptom control and to support the family, but with a sort of sigh as though hospice is just “giving in” or “not fighting.” Then we rush to fill that moment of silence after stating any of the above. Allowing time for the patient and family to absorb the new paradigm of care is too awkward. We hurry to fill the pause because we can’t stand to feel that we don’t have more solutions, and offering more chemotherapy just always seems to make everyone happier even as it postpones addressing the real issue at hand, which is dying of cancer. Saying the word “dying” is so hard but so necessary.
Another study in the Journal of Clinical Oncology from September 10 by Odejide et al polled oncologists about acceptability of end-of life (EOL) quality measures for patients with blood cancers. The threshold of acceptability was 55% of oncologists polled. Eighty-five percent of oncologists agreed to “no CPR in last 30 days of life”; what were the other 15% thinking? Eighty percent agreed to no chemotherapy less than 14 days before death. However, the group could not reach the threshold of acceptability for emergency department visits and hospitalizations in the last 30 days. They barely made the threshold for not giving blood or platelets in the last week of life. But 97% stated that the biggest barrier to good end-of-life care was “unrealistic patient expectations.” How do they think patients form those expectations?
Wouldn’t you like to see how patients feel about these interventions? If you are 7 days from dying, do you want to spend several hours in a facility getting a treatment that clearly is not beneficial? When the doctor tells the patient to come back for another office visit, go get this test, take this treatment, then the patient and family are getting the distinct impression that this is all for some benefit. Did the physicians actually state what their expectations of treatment were to the patient? Fifty-nine percent of the physicians admitted to holding onto “unrealistic physician expectations.” Therein lies the problem.
I saw a man last month who was clearly dying. It was unfortunate that he had tried chemotherapy but never had a response. The referring cancer center told him I was closer to him and I could give him more treatment. When I met him less than a week after he was seen at the academic center, I told him I was not comfortable giving him more treatment. He died a week later. Fortunately, I had obtained hospice care for him in his home. What were they thinking? Was it too hard to prepare him for what anyone could see was happening? Even in the medical record it stated that he had poor performance status and was “not likely to benefit from treatment.” There’s that expectation thing again. I know it is hard, but when you say “you are not obtaining any benefit from treatment and you are getting worse,” stop for a second. Think before you speak again. Your next sentence should not be, “But I guess we could try another treatment.” We are lying to ourselves as well as to our patients.
To make life—what remains of it—better for the patient, please say what you mean. Hold their hand, look at them, and say what needs to be said unequivocally, with compassion and candor.