NEW YORK NURSE: October 2010
by Bethel Ann Powers, RN, PhD, Professor, University of Rochester school of nursing
Persons with advanced dementia often experience problems with eating, leading to malnutrition and weight loss due to inability to control muscles needed for chewing and swallowing as a natural progression of their disease. Medical intervention involves enteral feeding, usually through a PEG (percutaneous endoscopic gastrostomy) tube. Studies report that:
Thus, surrogate decision making about whether or not to intervene with tube feedings over the course of what can be a prolonged dying trajectory seems to occur most often in the hospital setting. However, studies also show wide variability in U.S. hospital rates of feeding tube insertions, suggesting that decisions could be more closely linked with hospital practices and characteristics, than with the informed wishes of patients and families (Teno et al, 2009 & 2010).
It is important for patient and family decisions to be based on knowledge of the evidence about risks and benefits of feeding tubes. There is no conclusive evidence that feeding tubes promote length or quality of life, prevent aspiration, or improve nutritional outcomes, and there are a number of risks associated with their use (Sampson, Candy, & Jones, 2009; Finucane, Christmas, & Travis, 1999). In their advance directives, persons may have indicated wishes not to be kept alive by artificial means of nutrition or hydration. However, family members often fear that cessation of feeding will cause physical suffering.
Comfort feeding for persons with advanced dementia has been proposed as an alternative to the difficult choice between giving or withholding artificial nutrition and hydration (Palecek et al, 2010). “Comfort feeding only” (CFO) would be a new type of care order, documenting the decision not to use a feeding tube while at the same time constituting an individualized care plan that describes what caregivers will do to try to ensure persons’ comfort during hand-feeding.
The proposed CFO care plan should specify the individual’s:
When careful hand-feeding causes distress, or when oral feedings are no longer tolerated, alternate means of positive human interaction would be provided during, or for the remainder of, the meal period. Interaction could involve, for example, speaking to the person, refreshing mouth care, gentle massage, or therapeutic touch. CFO care plans would eliminate the care versus no care debates surrounding feeding tubes. As legitimate expressions of patient/family values and preferences to avoid invasive procedures, they would serve to refocus attention positively on what will be done for the person with advanced dementia to maximize comfort.
Finucane, T. E., Christmas, C., & Travis, K. (1999). Tube feeding in patients with advanced dementia: A review of the evidence. JAMA, 282, 1365-1370.
Kuo, S., Rhodes, R. L., Mitchell, S. L., Mor, V., & Teno, J. M. (2009). Natural history of feeding-tube use in nursing home residents with advanced dementia. Journal of the American Medical Directors Association, 10, 264-270.
Mitchell, S. L., Teno, J. M., Roy, J., Kabumoto, G., & Mor, V. (2003). Clinical and organizational factors associated with feeding tube use among nursing home residents with advanced cognitive impairment. JAMA, 290, 73-80.
Palecek, E. J., Teno, J. M., Casarett, D. J., Hanson, L. C., Rhodes, R. L., & Mitchell, S. L. (2010 ). Comfort feeding only: A proposal to bring clarity to decision-making regarding difficulty with eating for persons with advanced dementia. Journal of the American Geriatrics Society, 58, 580-584.
Sampson, E. L., Candy, B., & Jones, L. (2009). Enteral tube feeding for older people with advanced dementia. Cochrane Database of Systematic Reviews, Issue 2, Article No: CD007209.
Teno, J. M., Mitchell, S. L., Skinner, J., Kuo, S., Fisher, E., Intrator, O., Rhodes, R., & Mor, V. (2009).
Churning: The association between health care transitions and feeding tube insertion for nursinghome residents with advanced cognitive impairment. Journal of Palliative Medicine, 12, 359-362.Teno, J. M., Mitchell, S. L., Gozalo, P. L., Dosa, D., Hsu, A., Intrator, O., & Mor, V. (2010). Hospital characteristics associated with feeding tube placement in nursing home residents with advanced cognitive impairment. JAMA, 303, 544-550.