Submitted by Dr.Kattlove’s Cancer Blog

I remember an uncomfortable incident early in my practice when I was the weekend on-call doctor and seeing the hospitalized patients. One of them, an elderly lady with advanced cancer, asked me her diagnosis. Evidently, she hadn’t been told and her highly protective family didn’t want her to know. Being clueless, with a disturbing tendency toward truthfulness, I spilled the beans. That afternoon, my phone didn’t stop ringing with calls from outraged family members.

This memory brings up a major problem that all oncologists face. How much should they tell the patient about their outlook? In general, unless the patient is quite sick and not going to undergo any treatment, I suspect nearly all oncologists tell their patients their diagnosis and how advanced the cancer is.

The big issue is prognosis. How much does a patient want to know about his survival chances? Some, mostly younger people, want to know. In my experience, the younger a person is, the more likely it is that he will want to know all about his cancer. I think it is the basic optimism of younger people along with little experience of dying people that leads them into frank discussions about their disease.

But, in my practice, the older that patients were, the less they asked. And this was the dilemma. How do I get people to understand the seriousness of their cancer, especially if it looked like they were going to die in a year or two or even sooner? Some people asked. Usually these were more educated types, people alone, or successful business people. They were either used to dealing with hard facts or wanted to be able to plan.

But even in these situations, I needed to be very careful. Blurting out “Mr. Jones, you have about 3 months to live” can devastate anyone. So I would give ranges. “It could be long – maybe a year or two, but it could also be short – as short as 3 months. So you should plan for the worst, but hope for the best.” This, or some variant, was my usual message (confession – oncologists almost invariably overestimate a patient’s survival- you have to be an optimist to go into this business).

But what if a patient with advanced cancer didn’t ask. This happened most of the time. I wanted my patients to understand the seriousness of their cancer, but I didn’t want to devastate them with information they didn’t want. So, if they didn’t ask, I didn’t tell. I would always tell their spouses or closest family members, but if the patient didn’t ask, I kept quiet.

Was I right? I don’t know. Several recent articles in the Journal of Clinical Oncology suggest that somehow the oncologist should initiate a discussion by asking patients how much they want to know. Perhaps that is best, but, truthfully, this makes for such stressful situations for the oncologists, myself included, that we would rather avoid this issue if possible. It isn’t much fun to tell people they are going to die. Life as an oncologist is tough enough without discussing dying all day long. So often, oncologists wait for patients to start the conversation.

The most recent article, in the November 20 JCO, described how people who were over 70 felt about this issue. About half said no when they were asked if they wanted information about how long they could expect to live. And these were people who were searching out the best and had come to one of the world’s major cancer centers, Memorial Sloan Kettering. They were seeking what a major cancer center could offer and were not representative of people seen in my office in a corner of Long Beach, California. These patients came to me with no knowledge of my abilities. They came to me because their local doctor referred them. I think they seldom asked, because they weren’t seekers.

There is no correct answer for oncologists about what to tell. If you as a patient want to know how long you are expected to live, ask. If you don’t, that’s OK also. And if your doc is like me, if you don’t ask, he or she won’t tell.

But there is a problem in not knowing your outlook for survival. It can be tough on your loved ones, especially if you are not expected to live very long. They will know the truth and want to begin saying goodbye. This will be very important to them, but difficult if you are clueless. Lots to think about.

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