More on "Choices": One Patient's Perspective

I saw a new patient many years ago for a chief complaint of low back pain. In the course of my complete history, she added, "I have another problem, but I don't know if I want to tell you about it yet." I didn't push, and of course by the end of the interview she was comfortable enough to tell me:

I've had a "bad breast" [quotes mine] for five years.

One of her breasts was shrunken, hard, red and dry. Not oozing and stinky rotting, but a definite case of "locally advanced breast cancer." ("Partially auto-mastectomized" was the official oncologic terminology.)

My first thought, of course, was that her back pain was from bony metastases to her spine. As it turned out, it wasn't. She had spinal stenosis, for which she was operated on and did fine. But all she wanted for her breast was a simple mastectomy -- it was being irritated by the seat belt in her car -- and no further treatment. Investigation revealed she had some metastases to her ribs ("local invasion") that weren't bothering her, and no distant disease.

This was obviously a very slow-growing tumor to which she would eventually succumb, but her preference was to avoid the whole "cancer thing" of multiple surgeries, radiation, chemo, etc. It sounded like a reasonable option to me, so I found her a surgeon who I thought would be willing to honor her wishes and get her a "toilet mastectomy" ("toilet" in the sense of general cleanliness; another great oncologic neologism.)

I saw her back two years later -- after mastectomy, staged reconstruction including a tissue expander, chest wall radiation and chemotherapy. Here's what she told me:

They kept saying, "We have a lot of choices; a lot of choices. But first we have to do this. But then there are a lot of choices; lots of choices." Then later they say, "This is what we have to do next, but then there are lots of choices; lots of choices." After that they say, "We really should do this now, but after that you'll have a lot of choices; a lot of choices."

Clearly, she felt she wasn't really given much of a choice at all; at least not at any one stage along the way. Frankly, I get the sense that this is the experience of many, if not most, patients with cancer as well as with other conditions.

It's like asking a child what he wants for dinner. Few (smart) parents would simply allow the child an unqualified choice, so we say things like, "Do you want a hot dog or a hamburger for dinner?" Most of the time there are even fewer options, so we learn to say things like, "Do you want meatloaf or hamburgers?" Or even, "Do you want dinner on the red plate or the blue plate?" I don't mean to imply that patients are like children, but the principle is of giving others a sense of control while making the "real" decisions for them. It's still our responsibility to make good decisions, just as it is the parents' responsibility to provide a balanced diet of nutritious food.

In the comments to the previous post on this subject, Sid said this:

Not many of us would actively assist a patient to do that which we knew to be dangerous or ill-advised.

That criterion is a helluva lot more subjective than most docs realize. One person's "standard treatment" could easily be "ill-advised" by someone else, or even "dangerous" to yet another party. We need to admit -- even if only to ourselves -- that we are the ones making the choices.