Rethinking the Role of Tube Feeding in Patients with Advanced Dementia
Abstract & Commentary
Synopsis: Increasing information indicates that tube feeding seldom achieves intended medical aims and, in fact, causes suffering rather than preventing it. Ethical arguments and legal decisions support recommendations to avoid feeding tubes in patients with advanced dementia, and Gillick proposes that policies against gastrostomy tubes be adopted for most patients with advanced dementia.
Source: Gillick MR. N Engl J Med 2000;342:206-210.
Decisions about artificial nutrition and hydration in patients with dementia can be heart-wrenching for both families and physicians. Family members often express that they cannot let their relatives "starve to death," and physicians continue to prescribe nutrition and hydration even when all other forms of life support, including mechanical ventilation and dialysis, are stopped. A survey of 1446 physicians and nurses found that 45% of surgeons and 34% of medical providers believed that nutrition should be continued even when all other therapies were discontinued.1 Presentation of a case scenario to seniors (mean age, 77.8 years) at an adult day center revealed that 50% would accept enteral feeding even for a severely impaired and irreversible medical condition.2
Bioethical literature now argues that feeding tubes are not mandatory, and an opinion by the majority of the Supreme Court in the Cruzan case ruled that artificial nutrition and hydration constitute a form of medical care.3 Some may believe that withholding artificial nutrition is morally wrong, but if tube feeding is considered medical therapy, then the risks (judged according to the patient’s values) may be seen to outweigh the benefits in patients with advanced dementia. Gillick argues that even in the Roman Catholic and Orthodox Jewish traditions, which place an inestimable value on life itself, there is support for rejecting interventions that cause or prolong suffering, and against "impediments to dying" in the final year of life.
Evidence for the benefit of feeding tubes in persons with advanced dementia has been difficult to demonstrate. Adequate nutrition is often not provided due to problems with diarrhea, tube clogging, and the tendency of demented patients to pull out the tubes. Aspiration prevention from feeding tubes to avoid pneumonia has not been proven in any randomized studies; current theories of aspiration pneumonia blame saliva aspiration and reflux of gastric contents that are not affected by feeding tubes.4 Even broad studies to demonstrate prolongation of life by the use of feeding tubes do not show a survival advantage.5
The issue of improved comfort by providing hydration and nutrition in demented persons is of course difficult to assess, but Gillick argues that evidence from cancer patients under hospice care shows that terminally ill patients experience only transient hunger, and that thirst can be alleviated with ice chips and mouth swabs. Alzheimer’s patients frequently have impaired thirst mechanisms, which minimize their discomfort. Furthermore, tube feeding may cause discomfort from the procedure itself, subsequent skin irritations, dislodgment, and general rejection from the confused recipient. If the use of a feeding tube requires the need to restrain the patient (in one study, 71% of demented patients with feeding tubes were restrained in some way even after educational programs designed to reduce restraints6), even more distress and discomfort is caused.
A "new standard of care" is proposed with the assumption that persons with advanced dementia would not want a feeding tube if they had not previously expressed any opinion about life-sustaining treatments. Recommendations about tube feeding should be based on its effectiveness, for which there is little evidence in advanced dementia. Palliative care should be provided in the model of a terminal illness, with decisions about hospice care vs. curative care being made by weighing the pros and cons of each therapy.
Comment by Mary Elina Ferris, MD
This thought-provoking article in the New England Journal of Medicine Sounding Board encourages a new approach to a difficult area in geriatric care. By considering advanced dementia in the model of a "terminal illness" rather than a chronic condition, and by considering enteral feeding as a "medical therapy" rather than a support measure, new analyses can be considered to weigh the risks and benefits.
Gillick makes an interesting argument that eating difficulties are a natural consequence of the terminal stages of dementia, and should be seen as a marker of severe dementia. Eating is one of the last activities of daily living to be impaired, and its loss would signal that the patient has entered the final phase of the illness. Depriving the patient of oral nutrition prevents any enjoyment of taste and the social satisfaction of mealtimes. She argues that "feeding by hand is an act of nurturing that cannot be accomplished by hanging a bag of nutrients on a pole for delivery through a tube."
The difficulty with this approach lies in both the evidence and societal opinion. A new article using nursing home minimum data set information states that survival with feeding tubes was prolonged (50% at 1 year for those with tubes vs 39% without),7 and we can look forward to more conflicting evidence as this scientific issue is sorted out with additional studies. As Gillick notes, the majority of patients and physicians may still believe that artificial nutrition is indicated, even in hopeless cases.
Changing these prevalent beliefs will require more discussion and time.
Given the current lack of most evidence supporting artificial feeding either for improved survival, improved nutrition, or aspiration prevention, it would seem that there is little to support its use in patients with advanced dementia in a chronic care setting. Nonetheless, there remain institutional barriers, particularly in the nursing home, and Gillick acknowledges that federal regulations strongly require these facilities to provide adequate nutrition for residents. This will require documentation of nutritional assessment and appropriate attempts at feeding before surveyors accept decisions against feeding tubes.
Articles such as these will improve our quality of care for the elderly by stimulating us to rethink old assumptions, and to help us counsel families faced with difficult decisions for demented relatives. Our demand for better scientific evidence to support invasive technologies such as feeding tubes will result in improved information upon which to base those decisions. Gillick argues that our advice to families should be to recommend against feeding tubes in most circumstances for advanced dementia, rather than the nondirective approaches that have been advocated in the past.
References
1. Solomon MZ, et al. Am J Public Health 1993;83:14-23.
2. Ouslander JG, et al. J Am Geriatr Soc 1993;41:70-77.
3. Lo B, Steinbrook R. Ann Intern Med 1991;114:895-901.
4. Finucane TE, Bynum JP. Lancet 1996;348:1421-1424. [Erratum, Lancet 1997;349:364.]
5. Mitchell SL, et al. Arch Intern Med 1997;157:327-332.
6. Sullivan-Marx EM, et al. J Am Geriatr Soc 1999;47: 342-348.
7. Rudberg MA, et al. JPEN J Parenter Enteral Nutr 2000;24(2):97-102.
Which of the following possible benefits of tube feeding in patients with advanced dementia have been proven to be true?
a. Generally effective in prolonging life
b. Prevent aspiration pneumonia
c. Provide adequate nourishment and improved comfort
d. None of the above
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