Member Ned raised the question of how oncologists discuss prognosis and the goals of treatment. I think this is a very important topic that touches every relationship between an oncologist and the patient (and family and/or friends directly involved). First, I’ll say that this is an area of medicine that only recently, in the last decade or two at most, was integrated as a component of medical teaching. The older medical curriculum focused on memorization of anatomy and biochemistry and other subjects, with relatively little attention on doctor-patient relationships and communication. The approach to medical education now includes much more teaching, discussion, and even role-playing about how to communicate with patients. And as you might suspect, one of the most challenging aspects is communicating about a poor, and particularly a terminal, diagnosis.
I was the beneficiary of a medical education that included as much of that training as anyplace, even including video recording of role playing interactions with critiques of how to hone communication skills. Still, much of our training is based on growing “on the job” experience. Moreover, patients and families have very different approaches and styles. Some patients want to know everything they can, the good and the bad, while others may really be uncomfortable with hearing the more daunting aspects of their cancer and treatment. Some people may be reluctant to pursue treatment, others may want to try treatment while it is likely to be beneficial and then are very ready to focus more on supportive care, and others may really want to pursue every line of treatment they can find, beyond the point where benefits are anticipated. So patients/families can be very different, and it’s no surprise that I am not the perfect fit for everyone. While I try to be as sensitive as possible, I am more forthright than some people would prefer, and less of a cheerleader if I think the situation is challenging and few good options exist. I give a lot of credit to the few oncologists I know who seem to resonate with all of their patients, who have a true gift. It’s not just about having expertise in a subject.
So we wrestle with how to communicate about a poor prognosis. As we know, far too many patients with lung cancer cannot be cured, and often that is the case at the first meeting we have with a patient. Over the past several years, I have come to speak more in generalities than in specific details about prognosis. If a patient asks about a time line, I will provide as much information as they want, at least within terms of a general population of patients with a similar stage and performance status. But I don’t want to bludgeon patients who are hearing about their lung cancer for the first time with numbers that they may not be inclined to hear. The struggle is between giving enough information for patients to make a truly informed decision about treatment and demoralizing them with too much, too fast. I believe that patients have a right to know as much as I can tell them about their cancer and prognosis, but having the right to know also includes a right to forego some knowledge.
I personally don’t feel right about giving someone chemo for advanced lung cancer without telling them that it is associated with an overall improvement in survival by several months, but can’t be reasonably foreseen to be a curative therapy. My belief is that it would be inappropriate to pass over the palliative nature of therapy (meaning potentially improving survival, but not curing — not just a pat on the back and starting a morphine drip) and potentially mislead someone into thinking that chemo for advanced lung cancer can provide a cure. We can err by omission by not saying something that needs to be said, just as we can err by commission and say something inappropriate. Some oncologists are more vague, and I think some patients and families prefer that, but we all need to be true to ourselves.
So then there’s a question of “how much time do I have, doc?”. Some people ask, and some doctors offer this information without the question. First, we aren’t that good at predicting time lines other than when it’s appearing rather immediate, in the days to weeks range. The ability to say someone has 4 or 6 or 12 months to live is more TV movie than real life. If oncologists were that good at predicting the future, we’d be working on Wall Street. The numbers are almost always based on populations, but people aren’t statistics; there are people who fall all throughout the spectrum, some doing much worse than the general numbers, and some much better. That said, if someone asks me for a direct answer because they are trying to plan their lives, I try to give some idea of a range. I think it’s too easy to just plead ignorance and offer no information, and many people need as much information as they can get. But the idea of “the doctor said I have 10 months to live” just doesn’t make sense, and I think it’s one of the downsides of talking about statistics. If we say that there is a median survival of 10 months, hopefully explaining that this is the point where half of the population will have died and half remain alive, many patients will have the impression that they have 10 months to live. I know that some family members or nurses have relayed to me that I told a patient they had “6 weeks to live”, but that wasn’t what I had said at all. But numbers and complex ideas don’t always mix well with high stress and deep emotions.
There are, however, some cases where it seems that patients are being inappropriately told a time line. One of my patients, who switched to me from another oncologist, said that their first oncologist had told them they had a year to live. She suspected the same thing I had presumed, which is that she had misunderstood that discussion. So she called her oncologist two weeks later, who apparently told her, “No, that was what I said, except now you have 11 and 1/2 months”. Wow — I think she made a good move in switching oncologists.
I would welcome people’s input on whether they want as much information as they can get — bad or good — or whether they think that stats become weapons all too often.
posted by Dr. West @ 8:55 pm link to this post





April 7th, 2008 at 8:38 pm
Dr West. I am new to your site and I agree with you, each person hears the “stats” differently. I do believe alot of the reasoning being the stress of the disease. I have Stage IV NSCLC with brain mets. I had two rounds of chemo that almost killed me from toxicities. I had 36 radiation treatments to my chest. Within 2 months of stopping treatments my oncologist found a tumor on my cerebellum, within 2 weeks of that diagnosis, the nuerosurgeon found 2 more brain mets. I had SRS on 2 of the mets and I am now in the waiting period, to see if it worked. I am about to celebrate my 66th Birthday in 2 weeks. I feel that I have wonderful Chemotherapy Oncologist and Radiation Oncologist. Both Physicians started out just giving the “Stats” until the tumors were found. When I started asking the question “How Long Doc”? they were more open with me and told me my cancer was incurrable. I know I dont have an expiration date stamped on my body, only God knows that date, But I do appreciate honesty, as I have based my life on that, why not base my death on it too? I dont think I really started to fight back until the doctor’s were honest with me, my wife did all the prodding until the doc’s were honest and then i kicked in the fight. I am not sure this will help anyone, but being able to put my opinion here has helped me tonight. Thanks for being here.
June 22nd, 2007 at 8:41 pm
Yirol,
I’m amazed at how much we ALL adapt. I see patients and family members consider a pain-controlled day, or maintained weight between visits, to be a minor victory. It’s the same with me, although I would also hasten to say that I’m sure oncologists all have different outlooks and styles. First, a little bit of good news goes a long way. If a patient has a very good response to chemo, it becomes a cause for some real celebration. Stable disease is plenty good. And seeing a patient who is years out from their diagnosis, who has overcome tough odds, makes both of us incredibly happy. It also carries over to my other patients because I can tell them about the people who have done very well, giving them hope that they can do the same.
But there are days where it’s really, really hard. People common say, “I don’t know how you do what you do”, and some days I wonder myself. It’s easy for me to understand how so many oncologists burn out. You need to be compassionate, to care about your patients, but how could you bear to lose a real friend every week? That balance between compassion and enough professional detachment to keep going can be a mine field.
In truth, one of the reasons I started working in this capacity, doing cancer education for patients as well as physicians, is to try to make a meaningful contribution to the cancer community in a way other than spending almost all of my time in the clinic, where it really can be gut-wrenching many days.
-Dr. West