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.
posted by Maurice Bernstein, M.D. @ 5:04:00 PM
3 comments
3 Comments:
Dr. B-
As a current medical student and future physician reading your posting, “Telling patients they are terminal” I felt a surprising emotion: fear. My feeling of fear came from your comment that physicians often cause much of the confusion that surrounds end of life care. Specifically you stated that certain physicians will order more aggressive therapies and more diagnostic test when they know in their hearts that there is nothing more to do but ease the pain. In this situation, as you stated, the families will often get an unclear message as to the condition of the patient and how much time is left with their loved one. This confusing message that doctors often give patients can translate into disastrous effects. In this example the family might not understand that the last few days are near and the opportunity to say goodbye may pass them by.
It is easy to say that such physicians that give unclear messages are "bad doctors." However, although I promise to be the best physician possible I fear that I could someday make the same mistake. As a student among so-called "overachievers" in medical school the idea of failure is so frightening that we all work as hard as we can. In fact this fear of failure is what was selected for when we were accepted to medical school among thousands of applicants. Certainly this culture of fear will increase competition and cause us to study harder and ultimately work harder. So, as a medical student it is easy to see how a physician, who is deathly afraid of failure, would try to guard himself/herself as a human by squeezing any feeling of personal success out of every sick patient. However, as evident here, the patient's best interests may not always be aligned with those of the physician.
It is clear then that a truly great physician is one that is not afraid of being exposed to the feelings of failure (and this rational should be taught in school) and is able to identify the patient's needs as much more important than any feeling of personal success. I guess a good way to look at this situation is that a physician can gain a small victory of personal success by giving a clear message to the patient and his/her family so that the concluding days are filled with love and goodbyes. By acknowledging small victories like this a physician can maintain his/her sense of purpose and provide the best care for patients all the while.
This comment by the medical student and my response appears on the posting today August 17,2005. ..Maurice.
As a relative of terminally ill cancer patient who has had a fantastic physician to guide us through the last days. I would say wholeheartedly that you must be honest and allow the patient and relatives to make decisions around their care. For example we have been involved in discussion with the physicians and as a family we have discussed with the relative concerned and agreed which way forward we want to go. This has brought us great comfort and allowed us to prepare and feel involved in the patients care. Rather than standing by and feeling helpless. In contrast the patient has also felt that he still has some control over his care and what happens to him. As he was suffering from dysphagia latterly the patient agreed after some discussion with the physician and being fully informed of the options available to him agreed that further sustenance via a nasogastric feed would stop. Later we all discussed with the patient and doctor pain relief for the final stages and what effect this would have. Whilst it is painful to think of losing a loved one it is also comforting to understand and be involved at each stage. Before being told, my father knew that there was nothing more that could be done and the physician had just confirmed what he already knew but this has allowed him to still be in control and also to organise affairs and say goodbyes. This has been a great comfort to us all. Having been on the other end of not being told anything when my mother was terminally ill with cancer we were just confused all the time and not understanding when each milestone had been reached. We didn't have the opportunity to prepare ourselves or the patient for what was ahead. The patient was very frightened whereas my father in this case was very calm and focused on what lies ahead, the relatives are also more focused on what is required of them to help with a peaceful passing.
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