Getting Busy, Getting a Doc

One of the reasons this journal started was because Amelia and I were thinking about writing a book. "Use a blog," said my friend Lacey. "Try your stuff out on the internet and see if people add ideas that will enrich the book."

Sounded like a good idea at the time, and still is, though the first posts, mostly about handling life after a loved one leaves, haven't sparked a lot of comment (but grateful for those there are!). Maybe if anyone is reading this, or knows anyone who has some thoughts on what follows, they'll add their two cents' worth and we can all get busy together like the little flying person in the picture (from the Tucson Botanical Garden, by the way, during our visit with Amelia).

So, all you as-yet-unknown friends, help me with a reality test, would you? We thought about a book because it seemed we were learning things that seemed common sense but weren't according to friends. Like how we chose our doctors and how we avoided getting swindled by the gaggles of quacks out there. Is this new to you, or what you are already doing?

One of the first things that folks seemed surprised by was using the Internet to investigate possible doctors. Our first doc wasn't chosen that way, in all honesty, but final choices about others we were referred to were always done by first accessing information about them on the Web. When our local oncologist said he was out of options for Amelia, way back in mid-2000, he suggested two medical centers in Chicago and a short list of docs working at each one. My job was research, and so I went to Google and started following the chains of references from there.

One of the most likely-seeming docs was fairly famous just then because he had treated Chicago's Cardinal for pancreatic cancer; seemed like a no brainer. But he hadn't published anywhere about pancreatic cancer, only sporadically on other forms of cancer, and the only real public mention of the guy, other than the Cardinal's case, was about a speech he gave at the grand opening of a new cardiac care unit at his university.

Contrast this with one of the other docs who came up: a long list of publications on gastric cancers generally, and pancreatic cancer specifically, going back several years; clinical trials, always phases II or III, in which he worked as lead investigator or the regional coordinator for the studies; and even some peer testimonials, all of which mentioned his dedication to advancing a cure for gastric or pancreatic cancers and his commitment to meeting patient needs. When we met, I asked about the clinical trials. He said he economized his time by picking new protocols that had shown promise in early tests, rather than starting from the very beginning, and that he was so active in such studies because he wanted to assess the effectiveness of new models on his own, not just read about them in a journal. Which would you schedule an appointment with?

That was the first stage. The second was the doc's "audition," as they would say in the performing arts. When we first would go to see any prospective doctor, we went with questions, sometimes written down, mainly just to see how she/he would react to being questioned by a patient. It's kind of amazing that there are still so many docs who confuse their own identity with that of the diety or of Charlemagne or someone--they can't stand that you ask them "Why?" If the doc flunked that test, we'd never go back; if he did (all ours turned out to be of the male persuasion), then we'd focus on how he treated Amelia. Was he concerned? Courteous? Sympathetic? Interested in curing her? We decided to hire a doc only after we had checked "yes" in every one of these boxes and a few others, besides.

It turned out that, for all our concern in advance, it was pretty easy to spot the quacks when we approached the process this way. One case suffices. This was a clinic in our area that is pretty well-known for its work in treating cancer. There is even a very thick handbook or encyclopedia of practitioners that lists these guys and speaks glowingly of them. The lead guy is an MD but the clinic specializes in alternative methods: nutrition, vitamin and mineral supplements, the Gonzalez program, biofeedback and a whole range of other things, almost anything but chemo.

Amelia and I went for a first visit and spent almost an entire day meeting and greeting various people, having some preliminary tests and conversations, and so on. There was a sizable fee up front and then, if we signed up, most everything was an extra cost: $60/hour for biofeedback, for instance. Toward the end of the day our main contact, not an MD, came to see us with a proposed program. She was a little evasive about whether the great man, whom we had never seen once except as he passed in the hallway, had helped design this program, knew they were offering it to us, even knew we existed. The whole thing relied heavily on diet--which was good--and their own brand of "super-potent, all natural"--and incredibly expensive--dietary supplements. When you stand back from this pattern of data, what you see is a very large, well-marketed money-making machine, of which the engine was their high-margin pills. If it looks like a duck.....

Once you choose, should you stay? Amelia and I also learned from friends and people we met at hospitals all over the place that firing your doc is not an option that appears to occur to people much. I faced this with my Dad, a member of a generation that overall seems to take whatever the doc says as orders, at face value, and rarely if ever questions the quality of care they are getting. When my sister and I learned that, despite a grave illness and despite his being attended at a university medical center that was supposed to be excellent, he had never had more than 5 minutes alone with his primary doc, we began to steam just a little. When we visited and watched while he was attended by an aide, a very nice but clueless RN, who knew Dad but didn't know recent developments in his condition that we family all knew (hospitalizations, recent prescriptions, etc.), the kettle began to whistle. Their excuse was "we're terribly busy." Our response: "our father is terribly ill."

The doc had made the mistake of listing her e-mail address on the Internet, at the medical center's website; I used it, liberally. Told her this kind of treatment was unacceptable. Told her that my wife, after three years' experience with local docs and major teaching hospitals both, had never been so neglected, and we knew first-hand that better was possible. Told her that if things didn't change, significantly and soon, we would a) start agitating for our parents to fire her and b) lodge a formal complaint with her supervisors.

Magically, the very next time Dad went in, the doc was there to greet him, all smiles...........

Any thoughts out there? Thanks in advance!

Comments

[Juliet]

Because of some complications in my pregnancy I recently was seen at the only high-risk OB clinic my insurance would cover me for in Chicago (at UIC, if you're curious). I noticed something very interesting in my interactions with the various attending physicians. They approached me as though their word would be law, but once I began questioning them on my condition and their recommendations, their tones tended to change dramatically. Almost every one became more consultative, more willing to "co-manage" my case with the midwives who had provided my pre-natal care up to that point. But I realize that part of my ability to engage the doctors and get them to treat me in a more equal fashion is that my undergrad education was in biology. I understand a lot of the science behind what they do, and I know a lot of medicine is not based on science, but hunch and habit.

Another interesting thing happened with the residents. Whenever I questioned them, they tended to get much more defensive than the doctors. Their answers got more, not less, autocratic. In one case I had to go into a kind of show-off science-talk mode just to get the resident to stop treating me like my problem was something I would never understand.

Even though I was able to turn things around, I know not everyone can do that the way I did. It would be absurd to expect everyone to be up on biology and the social aspects of being a scientist. So I agree that more people need to know that they can research, audition and fire doctors. I think your idea of a book on this and related subjects is a great one.

[Bill/Thanks to Juliet]

Thanks, Juliet, for your helpful post (and the link to your own weblog--it's really neat! Your observations echo my own; your comment about using a science background to break through the barriers is especially well taken. After we had done our homework on the things the docs were telling us, and had enough "time in grade" to have learned some of the jargon, things did indeed change with both MDs and residents. But, also as you say, the mind-set to push back when needed, especially using facts and data, has to be the first step and that, from our limited experience, can be missing.
B

[Orkideh]

I think this is a good idea, Bill. Cancer sure does require the patient to have some solid research skills, and I think that many people who do not "know the system" or know how to access it, get pushed around. I remember that my own father (liver cancer) had a hard time with his physicians. Very rude, and very concerned about making sure he understood 100% that he was going to die soon. Contrast that with what the Master says about the role of the physician and the healing effect that encouragement can have for the patient. My father's strategy ended up being one that was based primarily on healing through food. He was lucky to hook up with a skilled physician in the end, but he still had to contend with other annoying doctors. Our entire family learned a lot.

[Bill/Thks to Orkideh]

Thanks to you, too, Orkideh, for your comments. There is a Baha'i doctor in Virginia who surrounds his patients with prayer, unless they object, and makes a point of asking for guidance every time he enters the operating room. When you meet him you are immediately struck by his sweetness, evident dedication, and know that he is making a real effort to be that ideal physician of which the Baha'i Writings speak. May the day not be far distant when all sufferers can find souls like his, no?

[bigaidege]

Whats up? New here and figured that I should post and say hello.

[christian louboutin]

You're a braver woman than I it was weeks before I could even begin to think about looking at the incisions from my lap. Even now I don't like to touch them.

They're...squishy.