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Feeding tube politics an awkward subject

by Philip Brasor

On Feb. 6, Nobuteru Ishihara, secretary general of the Liberal Democratic Party, recounted on a BS Asahi talk show a visit he recently made to a medical facility where patients were hooked up to gastric feeding tubes, or irō. He said it reminded him of the 1979 science fiction-horror movie “Alien,” whose most memorable image was that of a creature gestating in the abdomen of a human.

The remark was criticized. Health minister Yoko Komiyama said it hurt the feelings of people who undergo such treatment, though she didn’t mention that they are typically unconscious at the time and thus even less likely to care what a politician is saying about anything. What she really meant is that it hurt the feelings of the patients’ families. Her own father died while being connected to a gastric feeding tube.

Ishihara apologized, but his point, which was lost in the subsequent controversy, is that irō “do not pay respect to human dignity.” He added that he and his wife had decided to tell their own doctors to never insert the devices in their bodies, which are most often used when a patient is close to dying. Ishihara’s sentiment is not unusual, but public figures have to be careful how they express it.

It’s something the government will have to learn how to do. Between 250,000 and 400,000 patients are hooked up to irō at any given time, and the health ministry wants doctors to explain to patients and their families the purpose of these tubes before they become necessary so that patients can decline them preemptively. In the majority of cases, doctors unilaterally decide to insert irō into patients when they become unable to take nutrition orally. Some believe it benefits the hospital more than the patient, since the latter doesn’t have to be monitored so closely.

However, the government’s primary concern with regard to medical care is fiscal rather than humanitarian, so it has decided to pursue an economic solution to the problem of terminal care. The health ministry sets charges for procedures and medication in line with compensating doctors through national insurance, and these charges are reviewed every two years. Prices for home caregiving are adjusted every three years, and as it happens both sets of charges are set to be reviewed this April. The government’s aim is to reduce the number of hospital beds in Japan, which may sound counterintuitive given that the proportion of elderly is growing all the time. What it wants to do is shift terminal care out of hospitals and into homes. Consequently, the health ministry plans to increase compensation for home care, including emergency 24-hour house calls, because in the long run home care is cheaper than hospital care.

About 80 percent of deaths now occur in hospitals. In 1951, 80 percent of deaths occurred at home. As explained on a recent edition of NHK’s in-depth news report, “Closeup Gendai,” this change took place as doctors became dedicated to the idea that their main task was, as one physician on the program put it, “to fight off death” by any means necessary. This battle invariably took place in a hospital and was supported by Japanese insurance. What developed was a system of care that ignored the reality of death by pushing it further away. Medical treatment was equated with a relentless struggle against disease, so death wasn’t discussed until it actually arrived. This way of thinking affected how the government paid doctors for the work they did, thus creating a business model for hospitals whose livelihood became dependent on patients who were, whether acknowledged or not, about to die. These medical institutions kept patients as long as possible, since the government would compensate them for it. Consequently, things like irō became a normal component of treatment.

But as shown on the NHK report, this model became prevalent despite the fact that, if confronted with the question, people prefer dying at home. The report made this out to be a momentous disclosure, but it shouldn’t be. Of course people prefer to die in a familiar place surrounded by loved ones, but no one dared ask them that before, because the model was built on the premise that until the patient was actually dead he/she was always treatable.

The main problem, according to an editorial in the Asahi Shimbun, is the lack of doctors equipped to make house calls. Such doctors require a wide range of skills since they have to take into consideration patients’ wishes, not just their condition. And since the majority of their patients are or soon will be in a terminal stage, they also have to understand how to administer palliative care, working together with home nurses and caregivers, not to mention family members, who assume the largest burden. Dr. Fumio Yamazaki, who was profiled by NHK, is the pioneer in this field, having already set up an elaborate home care service in Kodaira, Tokyo. As of July 2010, only 10 percent of all medical facilities in Japan had resources to pursue home treatment. In addition, the health ministry is trying to encourage nursing homes not to ship patrons off to hospitals when they reach a certain stage, but rather bring in home-care doctors to treat them on the premises. Another concern is the increasing number of elderly who live — and die — alone.

These changes will be facilitated through economic incentive, but they also require an attendant shift in social awareness. Though most people would prefer dying at home, as the reaction to Ishihara’s remark shows it may not be a topic they are willing to talk about. NHK showed one terminally ill woman in the comfort of her own bedroom discussing with Yamazaki and her mother what her terminal treatment would entail. “If I’d been in a hospital,” she said, “there would have been some things I couldn’t say to my mother.” The breakthrough will be when public figures can talk about such matters frankly and not be accused of heartlessness.