“End of life” and euthanasia

The question of incentives in the House “health reform” bill to pressure the elderly to sign “end of life” agreements has become a lightning rod in the debate. Sarah Palin, mother of a child with Down’s Syndrome, has accused the Obama reform movement of fostering euthanasia.

The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s ‘death panel’ so his bureaucrats can decide, based on a subjective judgment of their ‘level of productivity in society’ whether they are worthy of health care,” Palin says. “Such a system is downright evil.”

While a bit over the top, there are legitimate reasons for concern. David Brooks on Meet the Press today, called Palin’s statement “crazy.” No, it wasn’t crazy and his reaction shows he still does not have the ear to hear what the public is worried about.

I was not reassured to read in an Aug. 1 Post article that “Democratic strategists” are “hesitant to give extra attention to the issue by refuting the inaccuracies, but they worry that it will further agitate already-skeptical seniors.”

If Section 1233 is innocuous, why would “strategists” want to tip-toe around the subject?

Perhaps because, at least as I read it, Section 1233 is not totally innocuous.

Until now, federal law has encouraged end-of-life planning — gently. In 1990, Congress required health-care institutions (not individual doctors) to give new patients written notice of their rights to make living wills, advance directives and the like — but also required them to treat patients regardless of whether they have such documents.

The 1997 ban on assisted-suicide support specifically allowed doctors to honor advance directives. And last year, Congress told doctors to offer a brief chat on end-of-life documents to consenting patients during their initial “Welcome to Medicare” physical exam. That mandate took effect this year.

The “living will” initiative was in hospitals and now we have financial incentives for doctors to “discuss” such topics with elderly or handicapped patents.

Section 1233, however, addresses compassionate goals in disconcerting proximity to fiscal ones. Supporters protest that they’re just trying to facilitate choice — even if patients opt for expensive life-prolonging care. I think they protest too much: If it’s all about obviating suffering, emotional or physical, what’s it doing in a measure to “bend the curve” on health-care costs?

Though not mandatory, as some on the right have claimed, the consultations envisioned in Section 1233 aren’t quite “purely voluntary,” as Rep. Sander M. Levin (D-Mich.) asserts. To me, “purely voluntary” means “not unless the patient requests one.” Section 1233, however, lets doctors initiate the chat and gives them an incentive — money — to do so. Indeed, that’s an incentive to insist.

Patients may refuse without penalty, but many will bow to white-coated authority. Once they’re in the meeting, the bill does permit “formulation” of a plug-pulling order right then and there. So when Rep. Earl Blumenauer (D-Ore.) denies that Section 1233 would “place senior citizens in situations where they feel pressured to sign end-of-life directives that they would not otherwise sign,” I don’t think he’s being realistic.

I remember 1978 when the first attempt at cost control came down from the federal government (Jimmy Carter was president). It was called “PSRO” or “Professional Standards Review Organizations.” We were told it was all about quality but the only measurements anyone was interested in were fiscal, like length of stay.

The enemy of compassionate decision making in these matters is government and legal scrutiny. I have assisted patients with their death. I remember very well one woman who had had a terrible battle with cancer of the anus, the same disease that recently took the life of Farah Fawcett. I had made the diagnosis as stroke of luck. She complained of an anal fissure. At surgery, the treatment at the time was what was called “lateral sphincterotomy.” This meant cutting part-way through the external sphincter, as these patients have a lot of sphincter spasm. The fissure is usually in the midline, anterior as it was in this patient, or posterior. The incision in the sphincter is lateral, away from the fissure. You don’t do anything to the fissure itself. In her case, I felt the fissure and it seemed too thick. Violating the treatment protocol, I biopsied the fissure and it turned out to be cancer. The treatment had become radiation instead of surgery and she had a course of radiation. Because the fissure was anterior, she had the recto-vaginal septum break down and she became incontinent. I had to do a colostomy and then a gynecologist and I spent the next two years trying to repair the recto-vaginal septum. Because it had been radiated, it wouldn’t heal. We finally were able to graft some tissue from her thigh into the septum and get it to heal after two failure and two years.

She never lost her sense of humor or her will to survive and get back to normal. Finally, after a terrible ordeal, we got her there. About a year later, she came in with abdominal swelling and nausea. An ultrasound showed fluid in her abdomen and I feared recurrence of the anal cancer. I did a tap of the abdominal fluid for cytology and it turned out to be an unrelated cancer of the stomach. We had a talk and I told her the cancer, because it was already into the peritoneal fluid, was incurable. What did she want to do ? She had a brother she hadn’t seen in a decade. We sent for him. I kept her on IVs until they had a chance to visit over a few days, then I turned her IV down to a minimal rate and she slowly dehydrated and died. She was always comfortable and was in complete agreement with the plan. We just didn’t talk about it and I didn’t have her sign any sort of consent.

Where would the government have helped in that process ?

I remember well another case. A man who owned the local clock shop. We had done business (I like clocks) and he came in one day with abdominal pain. He turned out to have Burkett’s lymphoma of the small bowel, a rare and rapidly fatal cancer. I resected the primary tumor and turned him over to the oncologist for chemotherapy. Six months later, I was called to see him in the hospital. He was dying and the nurses could not get an IV into him. They wanted me to place a subclavian catheter for IV fluid. I examined him and then went out to talk to the family, about five or six adult children. I asked them why they wanted me to do this. He was obviously dying and comfortable. Why prolong the misery ? Without an IV, he would die by morning. With an IV, he would die by morning. They held a vote and the majority voted to put in the IV. He died before morning. Would the government have helped in that situation ? I’m sure he had a “living will” because, by that time, hospitals required them. However, family can override the provisions of the living will.

In Holland, there is a law against euthanasia that is never enforced. If an ER doctor admits a patient to the hospital with end stage COPD, he loses his job. Those patients get a lethal injection in the ER. No consent; no discussion.

That is the final goal of cost control.

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