Exclusive: Bureaucracy causes severely demented to suffer unnecessarily

Numerous patients with severe dementia are being fed uncomfortably near the end of their lives with food tubes inserted through their noses.

leader sick 88 (photo credit: )
leader sick 88
(photo credit: )
Numerous patients with severe dementia are being fed uncomfortably near the end of their lives with food tubes inserted through their noses instead of less painlessly via a gastric tube to their stomach, according Prof. A. Mark Clarfield, head of geriatrics at Soroka University Medical Center in Beersheba. This is happening, he said, because the Health Ministry defines their care as the responsibility of the health funds rather than as patients whose nursing care it subsidized in institutions. Clarfield, who former head of the ministry's geriatrics division, is the main author of a new study, just published in the Journal of Gerontology, that compares the use of nasogastric tubes (known as zondas in Hebrew) and of percutaneous endoscopic gastrostomy (PEG, in which food is delivered via a tube inserted through the skin directly overlying the stomach in a minor operation) in Israeli hospitals, Canadian Jewish-affiliated hospitals and non-Jewish Canadian institutions. Other patients were either painstakingly fed by hand or, close to death, not fed at all. Looking at the feeding of severely demented patients in six hospitals in the two countries, Clarfield and colleagues found that Canadian non-Jewish institutions were least likely to use any feeding tube (3.2%), Canadian Jewish institutions in the middle (19%) and Israeli hospitals most likely (51.7%). "Whether any feeding tube should be used for such patients is a clinical question, but religious values also are involved. Judaism, unlike Catholicism, regards feeding of terminal patients as almost automatic, like giving oxygen; Catholics view it as something extraordinary," Clarfield told The Jerusalem Post on Wednesday. "But you don't have to force feed patients according to Jewish law. You can give them food by hand, but you can't force them to eat using a zonda - which doesn't let them speak or eat or sip water by themselves - and a PEG is the most convenient." Demented people can't say they don't want to eat, so they are forced. According to Jewish medical ethics, they have to be offered food and water. Not only is the use of feeding tubes for such patients much higher in Israel, but the nasogastric tube is preferred over the PEG, he said. Clarfield said he was not opposed to a nasogastric tube for acute situations, as when Ariel Sharon had one after his neurosurgery, and this tube was permanently replaced later with a PEG. "But if the patient is not able to swallow on his own, it is shocking that the nasogastric tube is preferred here only because of financial and administrative reasons." In Israel, if a patient gets a PEG in a hospital, he must wait for a "code" (Health Ministry approval for a subsidized bed in a chronic care institution), but if he has a nasogastric tube, he is the responsibility of his health fund and his care is included in the basket of services. This administrative matter influences hospitals and doctors, who can empty their beds faster by attaching a nasogastric tube, Clarfield stated. The Canadian-born geriatrician raised the problem several years ago when he was in charge of geriatrics in the ministry until 2001, but nothing was done because of budgetary constraints and "inertia." Now his study clearly shows that Israeli practice is different than that abroad. Asked to comment, ministry deputy director-general and medical division head Dr. Yitzhak Berlovich told the Post that "a few months ago, the ministry executive decided in principle to change this practice and not to differentiate between institutionalization of patients with a zonda and those with a PEG. We don't want doctors to take medical decisions solely for administrative reasons. We discussed it with heads of the health funds and we hope to change our policy, but it will take a few months to carry it out, and we need to work out financial arrangements with the health funds." Prof. Avraham Steinberg - a senior pediatric neurologist at Jerusalem's Shaare Zedek Hospital who headed the public committee that formulated the End-of-Life law relating to the care of terminal patients - commented that he agreed a PEG was preferable to a zonda, as it is much more humane and minimizes complications in patients. Handfeeding was very expensive, he said. But Steinberg thought PEGs should be inserted much earlier in relevant patients rather than waiting until they were terminal cases, and he opposed the idea of not feeding severely demented patients at all unless they had fewer than two weeks to live, which meant they would die not from lack of nutrition but from their illness.