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Saturday September 6,2008

Communication - Part 1

by Linda J. Austin

I sat in front of my computer most of Thursday, trying to decide what to write. Nothing seemed right. Today is the first day of spring, Wednesday a war began. If I paid attention to Henry Ford's motto, "Never complain, never explain." I'd erase everything and begin again. I think I'd better stay where I am and do what I can. For a long time I liked Ford's stoic statement. A good life philosophy perhaps, but it isn't very useful to caregivers navigating the healthcare system.

Some people say, "Doctors think they are gods and gods don't listen to mortals." Daniel Callahan, an expert on medical ethics, has a different point of view. In his book, The Troubled Dream of Life, Callahan says that the medical profession takes its direction from the public. "Medicine's own problems with death are exacerbated by the troubled perception of the public, uncertain whether death should be accepted or rejected. That public is as confused, as ambivalent, as medicine; and the two confusions work on, and influence, each other." Here is the enigma - nothing will change if we don't open our mouths. Communication is key.

Communication means not just that you hear my words, but that you understand what I am expressing.

Here's what happened when a retired Marine Lt. Colonel didn't get her questions answered:

Had a visit with the oncologist on Wednesday, and came away from, feeling somewhat frustrated. Lou (caregiver) was to say the least "not a happy camper" with what she perceived as his cavalier attitude. Of the ten questions I had Lou type out for him, he answered maybe half in a serious fashion. He avoided five questions important to me, and on one, his answer was: "You really don't want to know" - to which Lou responded: "If she didn't want to know, she wouldn't have asked you the question"...but he didn't answer.

I told Lou this morning that I was working on a letter to the doctor in my head, that she could type out for me requesting another visit - not a month from now, but maybe this week.

Lou called the American Cancer Society 800 number and put on the speaker phone which allowed me to participate in the conversation. The individual on the other end, indicated that many such doctors "just because they are doctors, want to make all the decisions themselves" and it was up to the patient to force the doctor to be more inclusive.

Just an update on my saga: After my last visit with the oncologist, I drafted and went through three iterations of a letter which I took with me on Wednesday last, gave to the clerk and asked her to give it to the doctor.

The basis of my letter concerned the issues. I reminded him that I had spent 26 years in the Marines and that I had little or no patience with evasive answers. "If you don't know, just tell me." I reiterated to him that if "I in any way misled you into believing that I didn't want "upfront, straight" answers, I apologize"...BECAUSE "that is exactly what I want and expect".