How do doctors deal with patients who have incurable disease?

A reader asked:

I'm truly curious as to how doctors deal with the frustration of dealing with people they can't, despite their best efforts, cure. I'm well aware that my doctors are doing their best and that there isn't a cure or quick fix -- I wonder if they know I know that (and of course, I do tell them). Nonetheless, sometimes I hate to even darken their doors with yet another complication or flare-up -- perhaps because I am so fond of them and appreciative of their efforts. I sometimes think we patients -- with all our kvetching -- would benefit from an understanding of our physicians on this human level. It's not a topic I've ever seen or heard addressed.

Oh, yes, this is a common question of Doctors. Well, I think it is. I actually haven't canvassed my fellow physicians on this one, but I have had friends ask me.

Actually it is quite easy. Starting out in medical school, one imagines that you will become a docto n sae lives. Then you got on the wards, and the livess are not that easy to save. After the shock of realizing that one is unable to cure everything, the young physician learns to do the best they can. I think ther ismoreto it then just the best that you can. For myself, I have also found a way of looking at the issue that works well for me. I have decided that my role is to give advice. This has made me much more comfortable. My ego is no longer dependent on patients taking their medicines. Nor does my ego anymore depend on the virulence of someones pnuemocccus. By realizing that I give advice, I am in balance with my ability to impact the world. When a patient is not able to follow my advice, I no longer feel frustrated, I look for ways to give better advice. When things do not work as planned, I recognize that information is imperfect and I look for more information in order to give better advice. When I decide on what initial tests to do, I do not fear not getting every test possible. I get sufficient tests to allow me to give reasonable advice under the circumstances.

Say someone has a terminal disease. I find out what last things they want to do: such as get to their sons graduation. Then I give advice on how to best achieve those goals. Sometimes the effort will need to be great to get a few extra days, but it will be worth it. With Crohn's, I know what the odds and consequences are of different choices, so I give advice on how to deal with problems as they occur. As advice depends on goals, it is a natural extension to involve my patients in the decision making process, not to decide what is the correct thing to do, but to help me understand what different consequences mean to my patients, so that the advice I give makes sense in the patient's contest. So my measure of success is whether the advice caused the best possible outcome given the circumstances.

So the next time you worry you are darkening your docs door, remember that you are not there for a cure, you are there for advice. By having a physician that understands your situation and goals, and by providing feedback on how the disease and treatment are being tolerated, you will be able to get advice to help you deal with the situation at hand.

Best of Luck,

Stephen Holland, M.D.
Section of Clinical Pharmacology
University of Illinois College of Medicine at Peoria
Gastroenterology Ltd, Peoria, IL

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