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Tuesday, December 18, 2012
Dear Dr. Camardi,
As I’m going over everything for the hundredth time that happened in those last two months when dad was dying, did I do the right thing in telling him the truth?
I know my father, and I was afraid that the truth would kill his spirit sooner than the disease and telling the truth is always good but did he really have to know?
But then there are days that I think about what you said about telling him a little at a time and maybe that was right, too.
But if I told him nothing I think he would have been happier for a longer period of time before his death.
I think coming from us it was a little better and with you being there it really made him feel better. I should have let you do it because when I started it just all came out at once, I couldn’t control my pain and I think it was very hard on him.
But then we did get it over with but that’s what I feel bad about: It was about me getting it over and easing my pain, not his. Tell me I’m wrong, I just don’t know, but I don’t think we should have told him.
Well, as long as I have done this work, I cannot remember a consistently right answer for any given situation, as they are all unique.
I have seen that in almost every case the motives for sparing the patient bad news have always been compassionate, as they try to shoulder the burden and pain of the truth solely on themselves.
Meanwhile, however noble the sentiment, they still tend to feel a great deal of doubt and guilt over keeping the patient in the dark .
This emotion is an innate indicator of what the right course of action should be. When considering what to reveal to the patient and how to reveal it, it is always better to lean toward the truth. In fact, not informing a patient the true nature of their medical information without their approval is ethically unacceptable.
Now you should know that I consider the medical information that I find following investigation as the property of the patient. Put another way, the patient’s data was always there, I just happened to uncover it and I am returning it, if you will, to the rightful owner.
Yet, it may not be quite as simple as that, based upon your system of values. Fundamentally, everyone has a right to know about their medical condition. How that information is presented is an art.
In its starkest terms, one may either report everything at once or nothing at all. I have seen both methods used and I have also seen both fail miserably as the result is the same thing: a poor prognosis.
I have seen positive, upbeat patients simply destroyed by the bad news . Then there are those people who take the bad news in stride and do the best they can for as long as they can.
Conversely, I have seen patients being told nothing about their dire prognosis and live their life right up to the time they can no longer live it with amazing strength .
On the other hand, I have seen patients become very bitter when they realize they were not being told everything the moment it became known, because they feel they have lost control of their lives.
Professionally, there are those in the field of medical ethics who feel that the nature of the information guides the method of discovery. By this we mean that if the information will result in a life-changing series of actions that can save or prolong life with dignity, with a good quality of life (i.e., the risk of treatment is worth it), then full disclosure is needed, as specialists will probably have to be called in and options need to be fully explored.
If the information is not actionable (the treatment is worse than the disease), then delaying the information can make sense.The middle ground, if time is not an issue, is to give the information in measured doses.
There was a time when doctors would use a concept called “therapeutic privilege” to withhold information from patients, for fear that the bad news could lead them to desperate acts such as suicide. I feel this concept has no place in modern practice, except in very rare circumstances .
We all must be very careful not to make the issue “all about us” and the pain we feel over the imminent loss of a loved one.
At the root of all of this is that one must know his patient, but, moreover, one must involve those who know the patient best: the family.
I take my cues from my interaction with the patient, their disease, the prognosis and their goals and then my discussion with those who have known the patient all their lives.
We can only speak truth to those who, in their hour of need, need to hear it. On a purely human level, it can be so hard to do but it is our duty to see it done.
Dr. Michael Camardi is a geriatrician at the Carilion Center for Healthy Aging and an assistant professor of medicine of the Virginia Tech Carilion School of Medicine. His column runs monthly.
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