How do doctors deal with patients who have incurable disease?

Ever wonder if your doc gets frustrated over not being able to cure incurable disease. Do you worry that you are only darkening the door of your physician, sorry to trouble them over something they cannot cure anyway? A reader asked, and I answeredHow do doctors deal with patients who have incurable disease?

A reader asked:

I’m truly curious as to how doctors deal with the frustration ofdealing with people they can’t, despite their best efforts, cure. I’m wellaware that my doctors are doing their best and that there isn’t a cureor quick fix — I wonder if they know I know that (and of course, I dotell them). Nonetheless, sometimes I hate to even darken their doors withyet another complication or flare-up — perhaps because I am so fond ofthem and appreciative of their efforts. I sometimes think we patients –with all our kvetching — would benefit from an understanding of our physicianson 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 imaginesthat you will become a docto n sae lives. Then you got on the wards, andthe livess are not that easy to save. After the shock of realizing thatone is unable to cure everything, the young physician learns to do thebest 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 workswell for me. I have decided that my role is to give advice. This has mademe much more comfortable. My ego is no longer dependent on patients takingtheir medicines. Nor does my ego anymore depend on the virulence of someonespnuemocccus. By realizing that I give advice, I am in balance with my abilityto impact the world. When a patient is not able to follow my advice, Ino longer feel frustrated, I look for ways to give better advice. Whenthings do not work as planned, I recognize that information is imperfectand I look for more information in order to give better advice. When Idecide on what initial tests to do, I do not fear not getting every testpossible. I get sufficient tests to allow me to give reasonable adviceunder the circumstances.

Say someone has a terminal disease. I find out what last things theywant to do: such as get to their sons graduation. Then I give advice onhow to best achieve those goals. Sometimes the effort will need to be greatto get a few extra days, but it will be worth it. With Crohn’s, I knowwhat the odds and consequences are of different choices, so I give adviceon 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 makingprocess, not to decide what is the correct thing to do, but to help meunderstand what different consequences mean to my patients, so that theadvice I give makes sense in the patient’s contest. So my measure of successis 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

Author: Stephen Holland

Stephen Holland, M.D. went to medical school at Northwestern University in Chicago, then did his medical residency at Loyola in Maywood (just West of Chicago). He then did research at the University of Alabama at Birmingham, did his GI fellowship there, and went to the University of Illinois at Peoria to teach and do research. He ran a successful private practice for over 12 years in Naperville, Illinois. Most recently he was chief of GI at Mt. Sinai Hospital in Chicago for 5 years.

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