A completely unpalatable situation

Inconsistencies in state subsidies are being exploited by those entrusted with feeding the completely helpless.

By
October 13, 2007 21:08
very dramatic

elderly senior 88.224. (photo credit: )

 
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Tube feeding is used to enlarge the livers of geese, and has been made illegal in Israel. But such enteral feeding is also used on humans, for both beneficial and questionable purposes. Silicone or polyurethane tubes descend to the stomach from one nostril (nasogastric feeding) via the throat to the esophagus, or directly from outside the abdomen via a hole into the stomach (endoscopic gastrostomy). A new Hebrew-language softcover book called Le'echol Oh Lahdol: Hazana Besof Hahayim (Feed or Cease: Artificial Nutrition in End-of-Life Care) has been published by Heiliger Initiatives in Tel Aviv on this very sensitive subject. Edited by Prof. Yaron Niv, the 150-page volume raises many ethical, medical and social issues that have yet to be addressed by doctors, nurses, ethicists and the government. Niv, chief of the gastroenterology institute at the Rabin Medical Center-Beilinson Campus and a professor at Tel Aviv University's Sackler Medical School, invited 29 experts in the fields of gastroenterology, nutrition, intensive care, gerontology, internal medicine and medical ethics, along with Health Ministry administrators, to contribute. He introduces the book by noting that with longer life expectancies, more and more Israelis will end their life while being cared for in a long-term nursing institution. Some will be fed by tube because they have difficulty swallowing, are demented, refuse to eat (because they want to die) or - sadly - because there are too few nurses or helpers with the patience to spoonfeed them. Nasogastric feeding is meant as a temporary measure; for the long term, feeding is provided in many cases by endoscopic gastrostomy, first introduced in 1980. Such intubations are today performed on an estimated 1,600 Israeli patients every year. The book is aimed at providing medical and ethical information to doctors, nurses, clinical dietitians and relatives of patients who need artificial feeding - not only terminal patients, but also those who need it temporarily due to a stroke. Even disabled babies and children who suffer from birth defects of the mouth, esophagus or stomach may need feeding tubes - along with anorexic teenagers to keep them from starving themselves to death. A GASTRIC feeding tube is inserted into the stomach through a small incision in the abdomen. The most common type is the percutaneous endoscopic gastrostomy (PEG) tube. It is put into place endoscopically while the patient is sedated, with an endoscope passed through the mouth and esophagus into the stomach. It takes about 20 minutes and can be performed at the bedside. The tube is kept within the stomach either by a balloon on its tip (which can be deflated) or by a retention dome. Gastrostomy tubes can also be attached in open surgical procedures through an incision and direct visualization of the stomach, as well as via laparoscope. Gastric tubes last about six months, and can be replaced without an additional endoscopic procedure. Gastrostomy is regarded as being relatively safe, but as with any surgery, patients are more likely to experience complications if they are smokers, obese, use alcohol heavily or use illicit drugs. Niv states that gastronomy should not be performed on a patient with an acute condition such as an infection in a general hospital. At least 30 days should pass until the patient recovers from his acute condition before a gastrostomy is performed. This will help reduce mortality rates, the Rabin gastroenterologist advises. In the meantime, the patient can be fed with a nasogastric tube (known in Hebrew as a zonda, which is ironic, because Zonda is the name of an exotic Italian sports car). The insertion of a PEG can cause complications and even death, especially if performed on patients over 75 and those with a history of aspiration (into the lungs), urinary infection, low body weight or dementia. The first 30 days after intubation are critical, and death rates range from 4% to 53% depending on who has done the study. But as these are patients who are very ill anyway, it's difficult to know whether death resulted from the procedure itself. NEARLY HALFWAY through the book, Prof. Mark Clarfield, chief of geriatrics at Soroka University Medical Center in Beersheba, shakes the reader up: "In Israel, the decision on what type of feeding is used, which seems simple and results from unique anatomical considerations in each patient, involves a whole political system. For historical reasons..., various types of feeding are found on the two sides of a line that separates responsibility of the Health Ministry ('codes') and the health funds. "Gastrostomy," says Clarfield, "is permitted in a patient defined as 'siudi' [requiring nursing care], which is funded from the ministry budget. The use of a 'zonda' boosts a patient immediately to the category of 'siudi murcav' [complex nursing], even when there is no change in his medical condition. According to the National Health Insurance Law, responsibility for treatment of a complex nursing patient rests with the health funds [basket of health services]. This division of authority is affected by professional medical considerations, and interferes with treatment of patients." There are some 18,000 geriatric nursing beds in the country. Of these, 6,800 are privately funded and 11,200 subsidized by a limited ministry budget. A bed is technically called a "code," and is allocated when the ministry has enough budget for it and when a patient or his immediate family can prove that the costs of care in an institution are too high and their income too low. An additional 1,000 beds are for complex nursing patients, and are funded by the health funds. Since treatment of most patients requiring geriatric nursing care is not in the basket of health services, families must subsidize care in institutions. When feeding is by nasogastric tube, that makes them complex nursing cases for which the health funds are responsible, and since the insurers have a say in how patients are treated, a conflict of interest results and non-medical considerations interfere with care, says Clarfield. This situation provides incentive for the health funds to ensure that the nasogastric tube is removed and replaced by a gastrostomy even when there are no medical grounds for doing so. When the ministry is in charge of deciding (it owns all state hospitals), it may choose a nasogastric tube for the opposite reasons - so the health funds will have to pay for the patient's care, Clarfield adds. (If it is any consolation, he notes that such things happen not only in Israel, but also in the US.) In addition, geriatric nursing departments may prefer to use gastrostomy so as "not to lose" patients to departments of complex nursing. THE MINISTRY'S conflict of interest - approval of "codes" to subsidize beds of patients who need nursing as well as supervision of treatment in all the nursing departments - can lead to absurd situations, declares Clarfield. "When a Health Ministry team arrives for inspection in a certain geriatric nursing institution, the medical team is liable to 'prepare' patients by removing their feeding tubes so the inspectors will not demand that they be transferred to a complex nursing department. Immediately upon departure of the ministry team, the patients are re-intubated and left 'illegally" in a nursing facility." Each of the factors involved - the ministry, the health fund and the institution treating the patient - has its own aims and interests, and the patient falls between the cracks. Clarfield blames the government's failure to fully implement the 1994 National Health Insurance Law, which was supposed to have transferred responsibility for geriatric nursing patients from the ministry to the health funds, but which was not carried out for various reasons. Implementation would have given the insurers incentive to invest in health promotion in the elderly, rehabilitation and comprehensive assessment of their elderly members to prevent the need for hospitalization in nursing facilities. He thus recommends clear, ethical and sensitive guidelines on the use of enteral feeding for terminal dementia patients. Clinical considerations rather than vested interests must determine what is used, and how people are fed should not determine how they are defined and who pays. Finally, geriatric nursing services must be included in the basket of health services. PROF. AVRAHAM STEINBERG, a senior pediatric neurologist at Jerusalem's Shaare Zedek Medical Center and a Jewish medical ethics expert whose work won him an Israel Prize, writes in his chapter that "methodological limitations" on enteral feeding research makes it difficult to separate the truth from other influences. He urges that a large prospective research study be conducted comprising dementia patients who are still physically well, and separating them into control and treatment groups so that the best way and what to feed them can be determined. "The results of such a study will enable us to advance toward an ethical decision relating to this whole subject," Steinberg concludes. I called Dr. Aharon Cohen, chief of geriatrics at the Health Ministry, and asked if he had read Niv's book. He had, but even before it was published, he said, a ministry committee was set up on the subject that he himself chaired. It included representatives of the four health funds and the ministry. "It is true that there is an anomaly of coverage for elderly patients. The Health Ministry agreed to accept responsibility for all nasogastric-fed patients now funded by the health funds, in addition to those fed by gastrostomy," he says hopefully. "But it has not yet been implemented because of financial problems. Discussions are still going on between the ministry director-general and the health funds," he adds. The Finance Ministry, he notes, "doesn't oppose this change - if it doesn't cost it any money." He conceded that in "some cases," a shortage of nurses or helpers results in helpless patients who can still swallow being fed by tube instead of by hand. "There are families who insist on feeding their relatives [who can swallow] in nursing departments." Asked about Steinberg's proposal for a major prospective study, Cohen notes that the ministry Chief Scientist's Office has very limited funding for research. "We have lots of subjects that are important, and feeding is one of them. We don't do research ourselves. If there is a proposal to do it, maybe the Chief Scientist could find the money. It's good that this subject has been raised by the book, but the answers aren't easy." Dr. Boaz Lev, the ministry's associate director-general (and a hill-climbing grandfather) provides the most touching chapter of the book when he makes believe he is a dementia patient who has undergone intubation. Over more than three pages, he voices the fears and pains of such helpless patients: "I hear I am precious to the state. And sometimes I hear over my bed busy medical team members discussing the question of whether my life is worthwhile. They have doubts about what they would want if they were in my place - a kind of cactus that has to be fed and cleaned... Between the tubes and the loss of memory, I am set up. Instead of synapses [in my brain] between my neurons, I have tubes. They emanate from almost every opening... I sit and live out the sentence that my old age has determined for me. Maybe I will get a third off for good behavior... In many things I have returned to my childhood - the memories, the upsets and the need for immediate gratification, the pleasure from sucking and from food... But for a long time I haven't eaten solids. I have a kind of tube with an opening in the middle of my belly. A new kind of navel, as if I had been born again."

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