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Betsy Murphy, FNP, CRNH The Hospices of the National Capitol Region Board Member, Alzheimer's Association National Capitol Area One of the most difficult decisions faced by the family of a patient with Alzheimer's disease is whether or not the patient should have a feeding tube inserted. In the past, many families chose to have a tube inserted because they felt that without it, the patient's health would decline and his or her suffering would increase. The majority of Alzheimer/Dementia patients will experience a variety of feeding difficulties spanning from disinterest in eating to severe distress including choking. This usually occurs in the late stage of the disease and is recognized as part of its expected course. Refusal of food and choking on food can be an intermittent problem for several months. Sometimes choking results in aspiration of fluids or food into the lungs causing pneumonia which can be fatal. In the past, feeding tubes were automatically ordered when the patient was losing weight or was aspirating fluids. The conventional wisdom was that the tube would solve this problem and would also reduce the chance of infections and bedsores. Unfortunately, the conventional wisdom was not true. A 1999 study at John's Hopkins Geriatric Center in Baltimore looked at 30 years of research on Alzheimer's/dementia patients and answered the following questions:
Will a patient with a feeding tube live longer than one without?Observations of nursing home residents have shown no survival advantage with tube feeding. In a study of 1386 patients, there was no difference in survival found between groups treated with or without tube feeding.Mortality of tube fed patients is substantial and placement of a feeding tube itself can cause death. Also, hand fed underweight dementia patients can live a long time. In summary, they found no published studies that suggested that tube feeding can prolong survival in dementia patients with swallowing difficulties.
Will the feeding tube prevent a patient from aspirating thereby preventing pneumonia?Available data tends to show that tube feeding may increase rather than decrease the risk of aspiration pneumonia. No published trial has shown that the risk is decreased.
Will a patient get stronger as a result of tube feeding?In a study of nursing home patients, no patient became stronger as a result of artificial feeding.
Will the patient suffer with hunger when all feeding is stopped?Assessing hunger in a non-verbal patient is difficult. There is no research done specifically on this type of patient for that reason. There is, however, research done on hospice patients at the end of life which shows that in a palliative care unit, fewer than 1/3 of the patients had any hunger and most of those had hunger only initially, which subsided. Research on healthy adults who fast have shown that with complete cessation of eating solid foods, hunger disappears in about 24 hours. However, When patients are fed small, insufficient amounts of food daily, hunger is constant.The recommendations of this research are that a comprehensive, motivated program of hand feeding is the proper treatment for Alzheimer's/dementia patients. Family members who make the decision should be informed that the best evidence available suggests that tube feeding will not help. Also, a feeding tube denies the patients the gratification of tasting food they enjoy at a time when they have so few remaining pleasures. In recent years, the American Medical Association has declared that Alzheimer's/dementia is a terminal disease. It is therefore expected that this type of patient will decline, lose weight and grow weaker. The AMA recommends that physicians help families plan for the patient to receive aggressive palliative care early in the course of the disease. Aggressive palliative care focuses on maximizing quality of life and patient comfort. Hospice care for patients with Alzheimer's/dementia is covered under the Medicare Hospice Benefit. Hospice serves patients at home, in assisted living facilities, in nursing homes and in hospitals. For more information about hospice care please call 1-800-869-2136 or visit us online at www.hospiceonline.org. The "Helpline" at the Alzheimer's Association of the National Capitol Area is available to provide further information and emotional support to families on this difficult issue. Please call them toll-free at (866) 259-0042.
In the National Capital Area chapter service territory, for more information about Tubefeeding, please contact the Chapter's telephone Helpline at (866) 259-0042. Outside the National Capital Area, please contact your local Chapter.
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