Half Of Alzheimer’s Patients Aren’t Told Of Their Diagnoses

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Mar 30, 2015 at 2:00 PM ET

Physicians tell only 45 percent of Alzheimer’s patients about their diagnoses, according to a new report from the Alzheimer’s Association. The surprising figure is based on Medicare data and interviews with still-lucid patients, conducted between 2008 and 2010.

Doctors often withhold information about particularly terrible diseases, like Alzheimer’s, because they are afraid of causing emotional distress, and potentially doing more harm than good. And though prior studies have shown that people respond relatively well to bad news (so the risk of self-harm is minimal) and that most patients want to know their diagnoses—even if there is no treatment available—the decision to disclose remains fraught with ethical pitfalls, as well as potential legal implications, especially if the doctor’s decision not to inform results in actual injuries.

We spoke with Arthur Caplan, the founding director of the Division of Medical Ethics at New York University, to find out more about how and when physicians should inform patients of an unwelcome diagnosis.

Do patients have a right to know their diagnoses?

The general rule is that individuals have a right to information that a reasonable person would want to know. There is a not a specific requirement for a physician to tell a patient their diagnosis, but the presumption is that you would want to know your diagnosis, no matter how grim or terrible it might be. Doctors should say, Look, we’re going to do some testing and it could be bad news, but if you don’t want to know the outcome, tell me now.

Is this a new ethical dilemma?

No, we’ve been down this road before. Many doctors didn’t want to discuss cancer, or even mention cancer, 30-to-40 years ago, because it was almost always a death sentence. But studies were done, and it became pretty clear that patients wanted to know. Alzheimer’s is today’s version of cancer—there’s nothing to stop terrible outcomes. But there’s no evidence that patients don’t want to know.

Why do so many doctors withhold Alzheimer’s diagnoses?

Alzheimer’s has such a stigma—it’s carved out a uniquely awful position in our culture and affects so many people. I think it’s also a little bit paternalistic. Physicians make a judgement call—I don’t think this will go over well with you, so I have to protect you by not telling you.

What are the potential harms of non-disclosure?

One of the stickiest issues used to be when a child had HIV, parents would say not to tell them [the child]. But then, when they grew into teens, it became hard not to tell them because they were sexually active, and you need to protect other people, too. There’s an element of this dilemma in Alzheimer’s; people need to know that they might have a memory problem before they drive a car, for instance.

Any advice for doctors who must be the bearers of bad news?

The trick is not whether you tell them, but when you tell them. If this is just the first visit, and you’re going to be seeing them more, let the bad news out slowly. Next visit, open the door with a gentle discussion of what’s going on, and then continue from there. Doctors treat this as all-or-nothing, but that’s not the real world. It doesn’t have to all happen on one day.