Last week my former spouse, age 52, died of complications from lymphoma. She was on chemo — first regimen appeared to work, then it rebounded, and she was completing second regimen.

Sat. – Sun. — I get into town for son’s 18th birthday, find her at home on oxygen, throat too dry to speak. Doctor’s appt. set for Thursday, no data available before then. She had called his office about the dryness of throat, and they said come in for the appointment, no other suggestions. I call a doctor friend back home and he suggests the oxygen could be drying throat, get a humidifier, which we do. Also discusses symptoms of septicemia and says to watch out for them, again advice she’d not been given.

Monday–admitted to hospital with apparent pneumonia. Breathing difficulties, heavy coughing, fluid buildup. I didn’t note it until later, but neck swelling.

Tuesday–I receive phone call that a 10 cm tumor was found in right lung, encircling vena cava. Other nodes also growing. Treatment options exhausted. Hospice time, will ask for DNR.

I explain to her. About 1.5 minutes into explanation, Oncologist No. 1 (not her primary; I never did see him) walks into room and proclaims “I see Dave is talking to you, so I suppose it’s no surprise.” He promptly asks for a DNR order so she can be moved to a hospice. She asks by note about last possible round of chemo, and he replies in her state it would be fatal.

She writes note asking whether she can tell him tommorrow, and he replies no, we need it now, might have to intubate you tonight, and you don’t want to die with a tube in your throat unable to talk (showing he wasn’t aware she already was unable to talk). He departs, calls in from time to time about it.

Wednesday–Oncologist No. 2 (again, not primary–I never did see the primary) appears with same request. I mention that a friend, a biochemist who works on chemo, suggested I ought to inquire about a surgical possibility — could we step over to the visiting room and talk?

Reply: “No. I have over a hundred patients, and I don’t have an hour or two to spend on this case. This is private enough.” I explain idea (surgery not to cure, but to restore condition enough to try last round of chemo). Without explanation, he says it won’t work, and leaves.

Later, staff doc comes by and says No. 2 had phoned in, with the usual request. I respond that I’d like a surgical consult on the matter. Perhaps indeed the surgical idea is no good. I’ll accept that if I hear it from a surgeon. That’s all I want. Staff doc leaves, returns with word that No. 2 refuses to schedule the consult, says if I want a second opinion I should talk with an oncologist, not a surgeon.

We gave the DNR and she died about 40 hours later.

Observations:

1. This isn’t my field, but it sounds uncommonly as if she had Superior Vena Cava Syndrome. Nobody mentioned that, or did anything for it (including suggesting that she’d be more comfortable sitting up. She’d try to sit, and they’d lay her back down).

2. The total medical advice I rec’d from docs during the four days (and since she spent much of it knocked out on painkillers, and the rest unable to speak, this means pretty much the total medical advice anyone got) was the phone call, of less than a minute, and a statement that surgery wouldn’t work. All other conversations were requests for the DNR. Total face-to-face with oncologists was under three minutes, and most of that was requests for DNR. (I got medical advice, and good advice — because I know a couple of docs back home, and the biochemist, and could call them at night. Heck, one of them made the guess as to SVCS, on a patient 2000 miles away, based on a layman’s description of symptoms.).

3. Seems like assembly-line medicine. She hit the end of the line. At that point there was no, zero, thought as to possibilities, altho she was 52, with a child in high school. She had become, in No. 2′s words, a “case.” It was the biochemist who was coming up with ideas. Okay, she’d never survive anesthesia. Go laparoscopic and up the painkillers. Okay, odds are very low. What are the odds in a hospice? If my tail’s on the line, I like a guy who thinks like that.

4. A doctor friend of mine pointed out “Guys like that are the ones who drive up malpractice premiums.” People don’t consult an attorney because they think something might have gone wrong, but because someone got them fighting mad. Short of that, they mourne and, if they think about it, reflect that the doc was a good person who cared and, if he might have made a mistake, no one is perfect. The ones who have been angered are the ones who start wondering how a 10 cm tumor could sneak up on you, or go researching superior vena cava syndrome.

Frankly, if anything gets messy here, I’ll protect the staff doc — simply because he was a young guy who seemed like a nice, caring, fellow who disliked being a messenger for a person who was neither. I pulled him aside and said it could be a learning experience — he was a good fellow, he’d never be a doc like No. 2, and that was a damn good thing.