Telling Patients They are Terminal

A visitor to my blog wrote me this e-mail today:

“Dear Dr. Bernstein,

I'm writing a pro and con article in physicians' voices for [a] magazine on the topic of telling patients that they are terminal. On one side, a physician will argue that it is necessary to be brutally honest with a terminal patient so he/she can get affairs in order, fulfill a wish, say goodbye, etc. The other side is to withhold information--unless asked outright--to continue giving the patient hope.

I'm sure we can find a physician who will take the side of being brutally honest, but we're wondering whether physicians also hold the opposing view--that of not revealing that the patient is terminal. “

I wrote back:

The fact is that most patients who are terminally ill already know they are terminally ill and so, frankly, there is nothing to hide. The biggest problem of all is for the physicians themselves (and of course, the patient's families) to acknowledge the inevitable course of the illness. Yes, in their physician's brain they know the end is near for their patient but in their heart they will deny it. The grim prognosis is denied because doctors don't like to have their patient die. It represents failure and to them, perhaps, a personal failure on their part. So some physicians find some diagnostic test or procedure or medication to provide which under other circumstances might be helpful but in their terminal patient there is of no benefit for the patient and may actually prolong the patient's dying or add unnecessary discomfort. The result of this behavior on the physician's part actually provides the basis for confusion to the patient's families. That is because the families may get "mixed messages" since one physician may be providing them a realistic prognosis and refusing their requests for futile tests or treatments while another of the patient's physicians may be giving in to the requests and thus signaling to the family that there is still procedures or treatments beyond comfort care available to perform.

If a patient is truly unaware of the terminal prognosis, in the U.S.A. culture, a careful, empathetic explanation of the disease, previous course and outlook and measures to be taken for comfort care should be provided by the physician. The degree and velocity of information disclosure would depend on how the patient is responding to the disclosure and what questions the patient is asking. However, within the U.S.A. there are other cultures where full or even partial disclosure of bad news to the patient is prohibited, the families instead are to be fully informed. Therefore standard disclosure practices to the patient may need to be tempered when these particular cultures are involved. I hope you see that this issue of informing the patient is not a simple one. ..Maurice.

Addendum: For more on the same topic read the post of July 18, 2004. I provided some links there to further resources on the topic.