There is a reason the winningest NFL teams spend hours watching game film. Watching it over and over, they see what is really happening on the field. Players learn to see patterns, mistakes, weaknesses to exploit. As they say, the camera doesn’t lie.
With every new patient, particularly those who are to start systemic chemotherapy, we spend a lot of time describing what their treatment will be, what side effects they may suffer, and the expected outcome. Not too terrible for some agents—rituximab, weekly taxane, trastuzumab. But what about platinum regimens, chemoradiation? Do we do it justice with our reassuring descriptions of something most of us have never experienced? Sometimes I feel like a poseur. Who am I to paint a picture of drug side effects? If I do it poorly, does the patient lose confidence in me? I try to be completely honest, and I am mostly on target, but we have all had that patient who after a horrendous time with a treatment regards us warily on the next visit—“You never said it would be like that!” It makes me feel small. I failed my patient.
Each patient signs a consent form for any treatment we give. How informed they really are is questionable. One survey showed that 78% of patients about to undergo palliative radiation treatment for lung cancer thought they would live longer as a result; 64% did not understand it would not cure them; and 92% of those who misunderstood also had inaccurate beliefs about the role of chemotherapy in their disease.
As a hospice chief medical officer, I have a steady stream of residents and palliative care fellows. I got so tired of giving the same symptom management lecture week after week that I made a video of it and now have the residents and fellows watch it before they come to the inpatient unit to make rounds. They love it, and it provides them a working knowledge to help them understand what is being discussed in the case management conferences.
A study was done that showed a video of patients with advanced Alzheimer disease to newly diagnosed dementia patients. The purpose was to show these newly diagnosed patients what to expect so they could make choices about interventions in advanced dementia before they were no longer able to make them. Those who watched the videos were far more likely to make decisions against feeding tubes or other aggressive interventions.
Patients with very treatable or curable cancer are not going to decline treatment unless they have other overriding comorbidities. But what about the patients we treat with no intent to cure. Do we owe them a better explanation? Would they be better served by a video they could watch with their family to truly make an informed decision? In this age of GoPro cameras and video capabilities on nearly every phone, are we behind the times? Healthcare systems and physician-owned practices all have websites and Facebook pages to tout how cutting edge they are with the latest, greatest (and most expensive—read profitable) treatments. But do you ever see anything oriented toward the nitty-gritty underbelly of oncology—the patients we cannot cure, who need to sit and discuss what is important at the end of life.
How about some high-quality marketing to them? We should be as honest about what we cannot do to the disease as we are about what we can do. How about an honest declaration of what the side effects are of “palliative” chemotherapy and how much longer a patient will not live with it? How about a disclaimer that says, “If you are over 90 and have metastatic cancer there is no chemotherapy that will enhance your life”? And I say this after seeing a 92-year-old this week who was given chemotherapy for his adenocarcinoma of unknown primary with liver and pancreatic metastases. Honestly, what could you say to that patient to sell them on chemotherapy? And if he came in saying he wanted to be treated, how could you treat him in good faith? I would see it as my role to explain why I would not recommend treatment and refer the patient directly to a good hospice program. He would live longer. This patient was so debilitated by one dose of chemotherapy he was rendered dependent for care.
How nice it would be to have a conversation with a patient and direct them to a video they could watch with the family so everyone can hear the same thing (repeatedly if necessary) and establish a common ground for treatment planning that may well be symptom control as needed.
I actually have two old clips on YouTube—one about living wills and one about how to refer patients to hospice care. I have never done one to explain why chemotherapy does not make you live longer in many cases. Maybe one day, but until then, I will try to be as honest and compelling as I can be to each patient in that unfortunate situation. Honest oncology—Take One!
1. Chen AB, Cronin A, Weeks JC, et al. Expectations about the effectiveness of radiation therapy among patients with incurable lung cancer. J Clin Oncol. 2013;31:2730-5.