AGS: Feeding Tubes in Advanced Dementia
AGS: Feeding Tubes in Advanced Dementia
When eating difficulties arise, feeding tubes are not recommended for older adults with advanced dementia. Careful hand feeding should be offered because hand feeding has been shown to be as good as tube feeding for the outcomes of death, aspiration pneumonia, functional status, and comfort. Moreover, tube feeding is associated with agitation, greater use of physical and chemical restraints, healthcare use due to tube-related complications, and development of new pressure ulcers. Efforts to enhance oral feeding by altering the environment and creating patient-centered approaches to feeding should be part of usual care for older adults with advanced dementia. Tube feeding is a medical therapy that an individual's surrogate decision-maker can decline or accept in accordance with advance directives, previously stated wishes, or what it is thought the individual would want. It is the responsibility of all members of the healthcare team caring for residents in long-term care settings to understand any previously expressed wishes of the individuals (through review of advance directives and with surrogate caregivers) regarding tube feeding and to incorporate these wishes into the care plan. Institutions such as hospitals, nursing homes, and other care settings should promote choice, endorse shared and informed decision-making, and honor preferences regarding tube feeding. They should not impose obligations or exert pressure on individuals or providers to institute tube feeding.
Food and the enjoyment of eating play important social, religious, and symbolic roles in most cultures. Given these diverse roles, it is not surprising that great concern often arises when a person begins to have difficulty eating or loses the desire to eat. People with advanced dementia often experience eating difficulties in conjunction with profound loss of cognitive, verbal, and functional abilities due to the progressive neurodegenerative process. Eating difficulties are considered a natural part of the disease process and, when persistent, characterize the end stage of dementia. In the Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life (CASCADE) study, a recent landmark study that followed individuals with advanced dementia over 18 months, more than 85% of the study cohort experienced eating difficulties, with subsequent 6-month mortality approaching 50%.
Individuals with advanced dementia are dependent on others for all aspects of their care and must rely on others to make decisions about the types of care they receive. Once persistent eating difficulties arise, family caregivers are often confronted with difficult decisions that typically include whether to continue hand feeding or initiate tube feeding (through placement of a percutaneous endoscopic gastrostomy (PEG) or feeding tube). This decision can be difficult for family and surrogate decision-makers given the interplay of cultural and religious beliefs, potential misperceptions about the natural progression of dementia, and lack of awareness of the evidence surrounding the benefits, risks, and burdens of tube feeding. Shared decision-making between healthcare providers and family members or surrogate decision-makers facilitates an evidence-based approach, while providing ongoing guidance and support, so that care plans reflect the individual's needs and goals.
Older adults with advanced dementia are usually bed-bound and unable to ambulate and have limited, if any, ability to communicate verbally. Pneumonia, febrile episodes, and eating problems represent a natural progression of the disease process and indicate a transition from advanced dementia to end of life, with each of these "complications" having a 6-month mortality that approaches 50%. The preponderance of evidence does not support the use of tube feeding to avoid eating difficulties in older adults with advanced dementia. A randomized controlled trial comparing the benefits and burdens of tube feeding with those of hand feeding in persons with advanced dementia has not been conducted because of concern surrounding ethically appropriate study design and methodology in part because of the vulnerability of the population. Current recommendations are based on expert opinion and highly consistent empirical work using observational data adjusted for potential confounders and selection bias.
Considerable variability in feeding tube use for residents in long-term care exists in the United States, which may reflect practices specific to nursing homes and hospitals rather than individuals' values or efficacy. As many as 34% of U.S. nursing home residents with advanced dementia have feeding tubes, two-thirds of which are inserted during an acute hospital stay. Caregivers report little conversation surrounding feeding tube decisions (more than half of caregivers report no conversation or one that lasts less than 15 minutes), and at times, families feel pressure for their use. Nursing homes with low rates of feeding tube use have environments that promote the enjoyment of food and administrative support and empowerment of staff to promote hand feeding, along with practices that foster shared decision-making among surrogate caregivers.
This guideline was first published in 1993 and reviewed in 2005. This statement is now updated and revised because of the publication of several sentinel studies further detailing the natural history of eating difficulties and burdens associated with tube feeding use in persons with advanced dementia.
Abstract and Introduction
Abstract
When eating difficulties arise, feeding tubes are not recommended for older adults with advanced dementia. Careful hand feeding should be offered because hand feeding has been shown to be as good as tube feeding for the outcomes of death, aspiration pneumonia, functional status, and comfort. Moreover, tube feeding is associated with agitation, greater use of physical and chemical restraints, healthcare use due to tube-related complications, and development of new pressure ulcers. Efforts to enhance oral feeding by altering the environment and creating patient-centered approaches to feeding should be part of usual care for older adults with advanced dementia. Tube feeding is a medical therapy that an individual's surrogate decision-maker can decline or accept in accordance with advance directives, previously stated wishes, or what it is thought the individual would want. It is the responsibility of all members of the healthcare team caring for residents in long-term care settings to understand any previously expressed wishes of the individuals (through review of advance directives and with surrogate caregivers) regarding tube feeding and to incorporate these wishes into the care plan. Institutions such as hospitals, nursing homes, and other care settings should promote choice, endorse shared and informed decision-making, and honor preferences regarding tube feeding. They should not impose obligations or exert pressure on individuals or providers to institute tube feeding.
Introduction
Food and the enjoyment of eating play important social, religious, and symbolic roles in most cultures. Given these diverse roles, it is not surprising that great concern often arises when a person begins to have difficulty eating or loses the desire to eat. People with advanced dementia often experience eating difficulties in conjunction with profound loss of cognitive, verbal, and functional abilities due to the progressive neurodegenerative process. Eating difficulties are considered a natural part of the disease process and, when persistent, characterize the end stage of dementia. In the Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life (CASCADE) study, a recent landmark study that followed individuals with advanced dementia over 18 months, more than 85% of the study cohort experienced eating difficulties, with subsequent 6-month mortality approaching 50%.
Individuals with advanced dementia are dependent on others for all aspects of their care and must rely on others to make decisions about the types of care they receive. Once persistent eating difficulties arise, family caregivers are often confronted with difficult decisions that typically include whether to continue hand feeding or initiate tube feeding (through placement of a percutaneous endoscopic gastrostomy (PEG) or feeding tube). This decision can be difficult for family and surrogate decision-makers given the interplay of cultural and religious beliefs, potential misperceptions about the natural progression of dementia, and lack of awareness of the evidence surrounding the benefits, risks, and burdens of tube feeding. Shared decision-making between healthcare providers and family members or surrogate decision-makers facilitates an evidence-based approach, while providing ongoing guidance and support, so that care plans reflect the individual's needs and goals.
Older adults with advanced dementia are usually bed-bound and unable to ambulate and have limited, if any, ability to communicate verbally. Pneumonia, febrile episodes, and eating problems represent a natural progression of the disease process and indicate a transition from advanced dementia to end of life, with each of these "complications" having a 6-month mortality that approaches 50%. The preponderance of evidence does not support the use of tube feeding to avoid eating difficulties in older adults with advanced dementia. A randomized controlled trial comparing the benefits and burdens of tube feeding with those of hand feeding in persons with advanced dementia has not been conducted because of concern surrounding ethically appropriate study design and methodology in part because of the vulnerability of the population. Current recommendations are based on expert opinion and highly consistent empirical work using observational data adjusted for potential confounders and selection bias.
Considerable variability in feeding tube use for residents in long-term care exists in the United States, which may reflect practices specific to nursing homes and hospitals rather than individuals' values or efficacy. As many as 34% of U.S. nursing home residents with advanced dementia have feeding tubes, two-thirds of which are inserted during an acute hospital stay. Caregivers report little conversation surrounding feeding tube decisions (more than half of caregivers report no conversation or one that lasts less than 15 minutes), and at times, families feel pressure for their use. Nursing homes with low rates of feeding tube use have environments that promote the enjoyment of food and administrative support and empowerment of staff to promote hand feeding, along with practices that foster shared decision-making among surrogate caregivers.
This guideline was first published in 1993 and reviewed in 2005. This statement is now updated and revised because of the publication of several sentinel studies further detailing the natural history of eating difficulties and burdens associated with tube feeding use in persons with advanced dementia.
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