Musings of a Dinosaur

A Family Doctor in solo private practice; I may be going the way of the dinosaur, but I'm not dead yet.

Friday, August 03, 2007

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.


At Fri Aug 03, 10:49:00 AM, Blogger Bookhorde said...

Well, was she unhappy with the result? Or was the process (chemo, radiation, etc) too painful?

At Fri Aug 03, 03:24:00 PM, Blogger #1 Dinosaur said...

She hated the tissue expander. She said every time they injected more saline (done to stretch the skin gradually) she felt like it was pressing painfully into her chest. Makes sense, of course, though I had never thought about it until she told me about it.

Yeah, she was unhappy with having to go through all that when she didn't really want to.

My point in posting this was to show doctors that our powers of persuasion can be formidable. We should be aware of this and use them judiciously.

At Fri Aug 03, 04:40:00 PM, Anonymous Anonymous said...

It's important to remember that the patient is the one who will have to physically go through whatever course of treatment is being recommended.

I think we all have occasions when we need to use the power of persuasion. The art is in *how* that power is used.

After my cancer dx, I was told I would not need radiation therapy. At a followup visit two months after completing chemotherapy, I was told I *would* need XRT after all. The onc pushed really hard and got rather angry when he sensed I was hesitating. At the consultation with the radiation onc, I got the full-court press again. It was like they expected me to sign on the dotted line right then and there.

I can say in retrospect that XRT was probably the right thing to do, but I resented the way it was crammed down my throat.

Saying no to something can be very, very hard for patients. It takes a lot of strength sometimes, and someone who is sick does not always have that strength. Also there is the fear that the doc will no longer want to see you because you disagree about the course of action. Or that you will be labeled as difficult and it will make things harder for you.

At Fri Aug 03, 05:54:00 PM, Anonymous Anonymous said...

Anonymous above is right - if you the patient don't go along with a doctor's treatment decisions (whatever your particular condition), then you run the risk of being labeled a difficult patient, making it all the more difficult to get decent care.

From what I understand, a doctor can 'fire' a patient who does not go along with all the treatment choices the doctor has made, even if the patient is willing to proceed with some of the treatments.

At Fri Aug 03, 05:59:00 PM, Blogger #1 Dinosaur said...

Anon x 2: You are both absolutely correct. That's precisely what I wish doctors would be more aware of.

At Fri Aug 03, 08:50:00 PM, Anonymous Anonymous said...

It should also be noted that our system is not very tolerant of doing less than the max. In a country where psychiatrists can be sued when their patients kill themselves, it is a thin line between "accepted patient's desire to not have treatment" and "negligently failed to ensure patient received treatment".

At Fri Aug 03, 10:26:00 PM, Blogger Unknown said...

I'm doing some volunteer work for the Obama campaign, and they have a new health care blog that I wanted to invite folks to visit. Some of these questions about doctor/patient relationships and quality of care have started to come up a bit, but I think the discussion could really benefit from your perspective.


At Fri Aug 03, 11:11:00 PM, Anonymous Anonymous said...

This is not as "serious" as cancer, but just as applicable, I suspect.

I went to the ER one night due to severe abdominal pain. Somewhere along the way, they decided it would be best for me to have an NG tube. Not knowing what it was, I agreed.

After the first conscious attempt to place it, I informed the doctor that I wouldn't be having an NG tube.

"Yes, you will," she said.
"Yes." She left at that point.

After the second attempt (made it probably 6-7 inches this time, I pushed her away and ripped it out. It felt like I had broken my own nose ripping the tube out. I could taste blood.

"No," I said.
"Yes, I'm sorry, but you need one, so you're going to get one."

I was terrified. I couldn't stand up, couldn't write. Could hardly see because of the tears in my eyes. I regretted my decision to visit the ER, and I wanted to leave, but was physically incapable of doing so. The promethazine and Ativan left me with nothing.

She left again and returned with three resident doctors. Or was it four? The picture is fuzzy in my head, but the memory of the feelings about what was happening are crystal clear to this day. They were there to hold me down so she could place the tube.

When it was done, I cried like a baby. I had never felt so utterly defeated, and I've never felt anything like it since. The three left after that. Business as usual, I suppose, and there were other patients to see.

In the final analysis, she overrode my right to refuse, which was probably the right thing to do, but I was utterly crushed afterwards. As you might guess, the whole story is much more involved than that, this is just one small snapshot, and when I tell friends about it, I emphasize the other things that happened. Like the blood spraying across the room after attempt number two. And vomiting barium all over my ex-girlfriend. (She was my ex then, too. ;) )

But truly, in those moments, I had never felt so powerless and scared of the doctor. I leave that little part out. When those residents came to assist her, I felt like a small child caught in nightmare I couldn't wake from.

All that said, I don't think I would have done it any differently had I been in her shoes. I was being difficult and she had a job to do, that was ultimately in my best interest.

At Sat Aug 04, 07:00:00 PM, Blogger Midwife with a Knife said...

anon 11:11: I do think that there are better ways of handling the ng tube situation than that. If a patient has a bowel obstruction, for example, there's nothing so urgent about the ng tube. You have time to wait, to do all of the other investigations, to wait until the patient's vomiting is so severe that they're willing to attempt the ng tube placement.

If it's a gi bleed, it's a little trickier, and sometimes you really shouldn't wait, but often you can. Even in those situations, you can explain to patients why they need it, the alternatives, and what will happen if you don't put it down.

Competent adult patients should always have veto power.

And I give a bunch of morphine and ativan (plus reglan if it's a Dobhoff feeding tube) in addition to the cetacaine (topical anesthetic) spray whenever it's remotely possible. I feel like having an ng tube is such an unpleasant experience, we ought to be able to make it a little less unpleasant.

At Sat Aug 04, 07:12:00 PM, Blogger #1 Dinosaur said...

Anon: I agree completely with MWAK that your care was badly mismanaged. In addition to doing a better job technically with the insertion (as well as more effective pre-medication) you should have been told -- compassionately and with as much explanation as you needed to understand the situation -- exactly why the tube was necessary and what it was supposed to accomplish. To all you ER folks out there, I don't care how busy the place is and how much hell is breaking loose; nothing justifies the assault described.

At Mon Aug 06, 02:40:00 AM, Anonymous Anonymous said...

The problem I have always encountered is that I have a chronic disease that generalists THINK they understand and they try to override the things that the specialist has said. The big problem is that their ignorance can, literally, kill me.

I run into this most often in ERs. I can actually interview physicians for experience in treating patients like me. This seems to preclude anyone with less than about 20 years of experience.

Many doctors think they know better than the patients when this is not true due to mitigating circumstances.



At Mon Aug 06, 02:12:00 PM, Blogger Sid Schwab said...

Thank you for pointing out how dangerous and ill-advised my comment was. And to think that for all these years I considered myself senstive to my patient's needs, and acting in their best interest. That's the problem with us surgeons. We don't understand a damn thing.

At Tue Aug 07, 01:47:00 PM, Anonymous Anonymous said...

"Investigation revealed she had some metastases to her ribs ("local invasion") that weren't bothering her, and no distant disease."

Actually, just to be clear, mets to the ribs IS distant disease, meaning stage 4. Local disease is confined to the breast and local lymph system.

I might have been much more in the "patient calls the shots" camp before I became a cancer in support groups with other patients.

It's incredible how much misinformation is out there. Not surprising, really, when so many people get their medical info from the Kevin Trudeau's (author of late night TV's "natural cures") of the world, or from the book aisle of Whole Foods supermarket, when so few americans have any real science education, and when so many Americans don't believe in evolution.

I really think that if more patients understood what a double blind, peer review study was, and how their chosen remedy compared with the conventional treatment, they would make different choices.

Also, most patients lack first hand experience with various treatments, and as such are not really the best ones to decide how they will respond. For example, the mastectomy of today in no resembles mastectomy a few decades ago. If I had known how easy a surgery it was, I would have been much less afraid of it. I would hate to think that women pass on this life saving surgery because of outdated notions of what it entails.

I think it's the responsibility of every doctor to do whatever they can to protect their patients, even if the patient doesn't agree.

I expect nothing less from my doctors. I've had my share of disagreements, but my wonderful team is willing to seriously discuss things with me, to make me understand their point of view, and to back up their arguments with data. Perhaps some of the problems doctors have with their patients is that they don't take the time to do these things.

At Tue Aug 07, 01:49:00 PM, Anonymous Anonymous said...

"I might have been much more in the "patient calls the shots" camp before I became a cancer in support groups with other patients."

That should have read: "before I became a cancer PATIENT in support groups..."


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