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When Evidence Clashes With Emotion: Feeding Tubes in Advanced Dementia
Difficulty with mastication and swallowing can occur as a result of numerous different diseases or conditions encountered in long-term care (LTC) settings, for example, in patients with advanced dementia. It is also common for patients at the end of life to experience weight loss and cachexia as a natural part of the dying process. When it becomes difficult for elderly persons to eat and drink by mouth due to these and other limitations, these patients, their family caregivers, and the healthcare team may consider the option of enteral feeding. Feeding tubes are frequently used for nutritional delivery although the evidence shows tube feeding generally does not prolong life or improve outcomes in patients with advanced dementia. Many decisions made about end-of-life nutrition are influenced by patient and family preferences and emotions, including cultural, religious, and ethical beliefs. In order to balance evidence-based medical care with the emotional investment of all stakeholders involved in a patient’s care, it is important that healthcare professionals understand the current evidence-based recommendations regarding the risks and benefits associated with tube feeding in this population.
In the August issue of the Journal of the American Geriatrics Society, the American Geriatrics Society (AGS) Ethics Committee and Clinical Practice and Models of Care Committee released an updated position statement on the use of feeding tubes in adults with advanced dementia. The statement, which had been updated from the 2013 version, reflects the most current evidence gleaned from the literature and presents the AGS’ recommendation against using feeding tubes for older adults with advanced dementia due to the increased risk of agitation and subsequent use of restraints (eg, physical, medications) as well as other complications, such as pressure ulcers and infection. Instead, the society advises hand-feeding these patients in a quiet and calm environment, while advocating respect for the wishes of the patient and his or her family caregivers when making this decision.
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Annals of Long-Term Care: Clinical Care and Aging® (ALTC) had the opportunity to speak with Ramona Rhodes, MD, MPH, MSCS, AGSF, division of geriatric medicine, University of Texas Southwestern Medical Center, Dallas, TX, and member, AGS Ethics Committee, about the multifaceted issue of feeding tube use in complex older adults with advanced dementia residing in LTC settings.
ALTC: What are some of the nutritional concerns associated with tube feeding in elderly persons residing in LTC settings? What does the evidence say?
Rhodes: For patients who rely on enteral nutrition as their source of nutrients, certain things must be taken into account. Some studies have shown that micronutrient deficiencies and malnutrition exist despite provision of adequate calories and protein in chronically ill patients who receive tube feeds,1 and other complications of tube feeding have been cited. Research suggests that refeeding syndrome and hyperphosphatemia may occur in LTC elderly patients who received nutrients via nasogastric tube.2 Glycemic control should also be considered, as diabetes is sometimes underdiagnosed in this population,3 and there are specific types of tube feeds that may be used in diabetic patients.
Even young adults with complex physical disabilities who reside in the LTC setting and are fed using percutaneous endoscopic gastrostomy (PEG) may be at higher risk of low bone mineral density4; and LTC elderly patients fed by nasogastric tubes have been found to develop metabolic alkalosis.5 Certain enteral formulations may result in loose stools; however, fiber-containing formulas may help to resolve that issue.6 Research has noted the effectiveness of having a registered dietician involved in the care of these patients,7 and given the complexities associated with tube feeding, a registered dietician should be included in the multidisciplinary team, if possible.
Feeding tubes are often placed in elderly residents with dysphagia to reduce the risk of aspiration and aspiration pneumonia. But what does the evidence actually say with regard to this suggested strategy?
Although there is some thought that feeding tube use reduces the risk of aspiration, and some research suggests that the site of placement may play a role,8 studies reveal that patients with feeding tubes are still at risk of aspiration and the development of aspiration pneumonia.9-11 Studies have shown that up to 22.9% of nursing home residents with PEG tubes aspirate, regardless of method of administration (continuous vs intermittent infusion),12 jejunostomy tube placement does not protect against aspiration pneumonia in patients known to aspirate,13 and that the presence of a nasogastric or gastric tube is a risk factor for development of nosocomial pneumonia among elderly in the LTC care setting.14 To lessen the likelihood of
aspiration and development of pneumonia, authorities have recommended ways to minimize aspiration, including: elevation of the head of the patient’s bed to 30 to 45 degrees during continuous feedings, unless a medical contraindication exists, and frequent assessment of nasogastric tube placement, as they can become dislodged.15-17 Persons receiving gastric tube feedings should be assessed for gastrointestinal intolerance, and gastric residual volumes should be measured every 4 to 6 hours during continuous feedings and immediately before each intermittent feeding.15-17
How does placement of a feeding tube affect outcomes and survival in elderly residents with advanced dementia in LTC settings?
In one study, 34% of nursing home residents with advanced cognitive impairment had feeding tubes.18 They are thought by some as a way to temper weight loss, heal pressure ulcers, reduce the risk of aspiration and aspiration pneumonia, and improve survival. There are a number of observational studies, however, that suggest otherwise. Studies have revealed that PEG tube insertion in nursing home residents with advanced dementia does not affect survival, and does not prevent or improve healing of pressure ulcers in this population.19-22 Furthermore, the risks of aspiration and aspiration pneumonia are not eliminated by placing a feeding tube.9,10,23
Other research findings indicate increased mortality in persons with severe dementia who have feeding tubes.24,25 Two-thirds of these feeding tubes are placed during an acute care hospitalization,24 and feeding tube placement in nursing home residents with severe dementia can often result in burdensome transitions to hospitals for evaluation of emergent complications.24,26,27 Persons who are hospitalized with acute illness and have feeding tubes inserted are at high risk for serious adverse events after insertion takes place,28 and are also at higher risk for early mortality than nursing home patients29; however, in some samples, more than two-thirds of nursing home residents have PEG tubes placed during an acute care hospitalization,24 thereby increasing their risk as well.
Research suggests that the presence of a feeding tube is associated with increased likelihood of hospitalization among frail, elderly nursing home residents.30 LTC providers should be aware that complications such as tube dysfunction, clogging,31 dislodgement, and infection32 may occur, requiring emergent evaluation. Studies have shown that nursing home residents with advanced age, low serum albumin, and multiple comorbidities have decreased survival after PEG tubes are placed.33 Still, other research has shown that of nursing home residents with chewing and swallowing problems, those with feeding tubes have been found to have poorer 1-year survival than residents who are not tube-fed.34 These findings indicate that patient characteristics, complications, and likelihood of survival should be taken into account when feeding tube placement is considered.
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How can the LTC healthcare team involve family caregivers in the decision-making process?
Though careful consideration must be made when patients and their caregivers are met with the decision to place or forgo the placement of a feeding tube, this decision is equally if not more complex in patients with advanced or severe dementia. An estimated two-thirds of persons with dementia die in nursing homes,35 and LTC providers may be asked to provide counsel to caregivers about their loved one’s nutritional needs. Patients with severe dementia are nonverbal, bedbound, and have dysphagia as a result of this neurodegenerative process, and caregivers of these patients must be made fully aware of the disease trajectory of Alzheimer’s disease and other dementias as well as the risks associated with having a feeding tube placed.
The goal of the LTC healthcare team should be to assist caregivers in making an informed decision about how best to meet their loved one’s nutritional needs. In doing so, options other than feeding tube placement may be available, and should be discussed. Hand feeding may be an alternative,36-38 though this may be hampered by cost39 and facility staffing issues. Clinical guidelines and decision aids have been developed to assist healthcare providers, patients, and caregivers in the decision-making process associated with feeding tube placement with advanced dementia40-43 and have been shown to improve decision-making about feeding options in dementia care.43,44 These often involve a comprehensive assessment looking for reversible causes of inadequate nutrition, and if tube feeding is initiated, specific goals and time intervals are established for reviewing whether these goals have been achieved.41
Family members have reported that discussions with healthcare providers about feeding tube insertion were either abbreviated or did not occur, and they have sometimes felt pressured by the physician to insert a feeding tube.45 They have also noted that their loved one was often pharmacologically restrained, and they were less likely to report excellent end-of-life care.45 Opportunities to improve shared-decision making surrounding feeding tube insertion exist, and efforts are being made to improve communication about feeding tube insertion among patients, family caregivers, and healthcare providers.40,41,43
If the patient, family, and healthcare team decide that a feeding tube should be placed, what important measures should be taken to minimize the risk of infection associated with the feeding tube?
Antibiotic resistance is an emerging public health concern that hospitals and healthcare systems must address, and though the threat of antimicrobial resistance is most prevalent in the hospital setting, it has been noted in the community and LTC settings as well. An estimated 85% of serious methicillin-resistant Staphylococcus aureus (MRSA) infections are associated with healthcare exposure, but nearly 14% of the infections are community-associated.46 Given that LTC residents with feeding tubes are often transported to hospitals for care, healthcare providers in the LTC setting should be mindful of possible colonization of certain bacteria and how to reduce spread of antimicrobial-resistant organisms in their facilities. Among the antibiotic-resistant organisms most commonly found in LTC populations are multidrug-resistant Gram-negative bacteria, MRSA, and vancomycin-resistant Enterococci.47
Studies have shown that tuboenteral (PEG and nasogastric tube) feeding in elderly patients receiving care in nursing and skilled nursing facilities may be associated with oropharyngeal colonization with bacteria, such as resistant strains of Pseudomonas aeruginosa.48 Oropharyngeal colonization of Klebsiella, Proteus, and MRSA has also been detected in patients with nasogastric and PEG tubes who reside in skilled nursing facilities and community nursing homes.49,50 Infection control programs may significantly reduce bacterial contamination associated with enteral feeding,51 and LTC providers should use this information to create strategies that will reduce spread of antimicrobial resistance in their facilities.
What should be the goals of future research?
While there is an extensive amount of research about feeding tube use, including indications for placement, complications associated with placement, and outcomes for patients with advanced dementia, there is more work to be done. Research regarding feeding tube use among patients with advanced cognitive impairment is largely observational. Although there is substantial evidence that feeding tube insertion does not promote wound healing, improve survival, or prevent aspiration pneumonia in this population in these observational studies,22,23,25,26 researchers should consider the possibility of randomized controlled trials to either strengthen or refute these findings if they can be done in an ethically responsible way. Also, members of underrepresented groups more often choose feeding tubes as an option for nutritional support.52 The reasons for this dynamic should be explored, and interventions should be designed to enhance culturally-sensitive shared-decision-making for patients and families of diverse racial/ethnic groups and their healthcare providers.
References
1. Henderson CT, Trumbore LS, Mobarhan S, Benya R, Miles TP. Prolonged tube feeding in long-term care: nutritional status and clinical outcomes. J Am Coll Nutr. 1992;11(3):309-325.
2. Lubart E, Leibovitz A, Dror Y, Katz E, Segal R. Mortality after nasogastric tube feeding initiation in long-term care elderly with oropharyngeal dysphagia--the contribution of refeeding syndrome. Gerontology. 2009;55(4):393-397.
3. Arinzon Z, Shabat S, Shuval I, Peisakh A, Berner Y. Prevalence of diabetes mellitus in elderly patients received enteral nutrition long-term care service. Arch Gerontol Geriatr. 2008;47(3):383-393.
4. Grainger M, Dilley C, Wood N, Castledine G. Osteoporosis among young adults with complex physical disabilities. Br J Nurs. 2011;20(3):171-175.
5. Segal R, Iaina A, Lubart E, Leikin I, Leibovitz A. Metabolic alkalosis in skilled nursing patients. Arch Gerontol Geriatr. 2009;48(2):173-177.
6. Bass DJ, Forman LP, Abrams SE, Hsueh AM. The effect of dietary fiber in tube-fed elderly patients. J Gerontol Nurs. 1996;22(10):37-44.
7. Braga JM, Hunt A, Pope J, Molaison E. Implementation of dietitian recommendations for enteral nutrition results in improved outcomes. J Am Diet Assoc. 2006;106(2):281-284.
8. Metheny NA, Stewart BJ, McClave SA. Relationship between feeding tube site and respiratory outcomes. JPEN J Parenter Enteral Nutr. 2011;35(3):346-355.
9. Finucane TE, Bynum JP. Use of tube feeding to prevent aspiration pneumonia. Lancet. 1996;348(9039):1421-1424.
10. Langmore SE, Terpenning MS, Schork A, et al. Predictors of aspiration pneumonia: how important is dysphagia? Dysphagia. 1998;13:69-81.
11. Langmore SE, Skarupski KA, Park PS, Fries BE. Predictors of aspiration pneumonia in nursing home residents. Dysphagia. 2002;17:298-307.
12. Cogen R, Weinryb J. Aspiration pneumonia in nursing home patients fed via gastrostomy tubes. Am J Gastroenterol. 1989;84:1509-12.
13. Cogen R, Weinryb J, Pomerantz C, Fenstemacher P. Complications of jejunostomy tube feeding in nursing facility patients. Am J Gastroenterol. 1991;86:1610-1613.
14. Harkness GA, Bentley DW, Roghmann KJ. Risk factors for nosocomial pneumonia in the elderly. Am J Med. 1990;89:457-463.
15. American Association of Critical Care Nurses. Prevention of aspiration. https://www.aacn.org/WD/practice/docs/practicealerts/aacn-aspiration-practice-alert.pdf. Published November 2011. Accessed August 19, 2014.
16. Bankhead R, Boullata J, Brantley S, et al. Enteral nutrition practice recommendations. JPEN J Parenter Enteral Nutr. 2009;33:122-167.
17. Palmer JL, Metheny NA. Preventing aspiration in older adults with dysphagia. Am J Nurs. 2008;108:40-48.
18. Mitchell SL, Teno JM, Roy J, Kabumoto G, Mor V. Clinical and organizational factors associated with feeding tube use among nursing home residents with advanced cognitive impairment. JAMA. 2003;290:73-80.
19. Candy B, Sampson EL, Jones L. Enteral tube feeding in older people with advanced dementia: findings from a Cochrane systematic review. Int J Palliat Nurs. 2009;15:396-404.
20. Cervo FA, Bryan L, Farber S. To PEG or not to PEG - a review of evidence for placing feeding tubes in advanced dementia and the decision-making process. Geriatrics. 2006;61:30-35.
21. Teno JM, Gozalo P, Mitchell SL, Kuo S, Fulton AT, Mor V. Feeding tubes and the prevention or healing of pressure ulcers. Arch Intern Med. 2012;172:697-701.
22. Teno JM, Gozalo PL, Mitchell SL, et al. Does feeding tube insertion and its timing improve survival? J Am Geriatr Soc. 2012;60:1918-1921.
23. Pick N, McDonald A, Bennett N, et al. Pulmonary aspiration in a long-term care setting: clinical and laboratory observations and an analysis of risk factors. J Am Geriatr Soc. 1996;44:763-768.
24. Kuo S, Rhodes RL, Mitchell SL, Mor V, Teno JM. Natural history of feeding-tube use in nursing home residents with advanced dementia. J Am Med Dir Assoc. 2009;10:264-270.
25. Meier DE, Ahronheim JC, Morris J, Baskin-Lyons S, Morrison RS. High short-term mortality in hospitalized patients with advanced dementia: lack of benefit of tube feeding. Arch Intern Med. 2001;161:594-549.
26. Givens JL, Selby K, Goldfeld KS, Mitchell SL. Hospital transfers of nursing home residents with advanced dementia. J Am Geriatr Soc. 2012;60:905-909.
27. Teno JM, Mitchell SL, Skinner J, et al. Churning: the association between health care transitions and feeding tube insertion for nursing home residents with advanced cognitive impairment. J Palliat Med. 2009;12:359-362.
28. Abuksis G, Mor M, Segal N, et al. Percutaneous endoscopic gastrostomy: high mortality rates in hospitalized patients. Am J Gastroenterol. 2000;95:128-132.
29. Lang A, Bardan E, Chowers Y, et al. Risk factors for mortality in patients undergoing percutaneous endoscopic gastrostomy. Endoscopy. 2004;36:522-526.
30. Fried TR, Mor V. Frailty and hospitalization of long-term stay nursing home residents. J Am Geriatr Soc. 1997;45:265-269.
31. Mathus-Vliegen LM, Koning H. Percutaneous endoscopic gastrostomy and gastrojejunostomy: a critical reappraisal of patient selection, tube function and the feasibility of nutritional support during extended follow-up. Gastrointest Endosc. 1999;50:746-754.
32. Hull MA, Rawlings J, Murray FE, et al. Audit of outcome of long-term enteral nutrition by percutaneous endoscopic gastrostomy. Lancet. 1993;341:869-72.
33. Shah PM, Sen S, Perlmuter LC, Feller A. Survival after percutaneous endoscopic gastrostomy: the role of dementia. J Nutr Health Aging. 2005;9:255-259.
34. Mitchell SL, Kiely DK, Lipsitz LA. Does artificial enteral nutrition prolong the survival of institutionalized elders with chewing and swallowing problems? J Gerontol A Biol Sci Med Sci. 1998;53:M207-M213.
35. Mitchell SL, Teno JM, Miller SC, Mor V. A national study of the location of death for older persons with dementia. J Am Geriatr Soc. 2005;53:299-305.
36. DiBartolo MC. Careful hand feeding: a reasonable alternative to PEG tube placement in individuals with dementia. J Gerontol Nurs. 2006;32:25-33.
37. Garrow D, Pride P, Moran W, Zapka J, Amella E, Delegge M. Feeding alternatives in patients with dementia: examining the evidence. Clin Gastroenterol Hepatol. 2007;5:1372-1378.
38. Palecek EJ, Teno JM, Casarett DJ, Hanson LC, Rhodes RL, Mitchell SL. Comfort feeding only: a proposal to bring clarity to decision-making regarding difficulty with eating for persons with advanced dementia. J Am Geriatr Soc. 2010;58:580-584.
39. Mitchell SL, Buchanan JL, Littlehale S, Hamel MB. Tube-feeding versus hand-feeding nursing home residents with advanced dementia: a cost comparison. J Am Med Dir Assoc. 2004;5:S22-S29.
40. Tube feeding (PEGs). Compassion and Support at the End of Life website. https://www.compassionandsupport.org/index.php/for_patients_families/life-sustaining_treatment/artificial_hydration_and_nutrition. Accessed August 19, 2014.
41. Rochester community-wide practice guidelines: tube feeding/PEGs. Rochester, NY: Monroe County Medical Society Quality Collaborative. https://www.compassionandsupport.org/pdfs/patients/advanced/Complete_PACKET_of_PEGs.Tube_Feeding_Guidelines_MCMS_2010_22_pgs_.pdf. Published April 2013. Accessed August 19, 2014.
42. Hanson LC, Carey TS, Carey TS, et al. Making Choices: Long Term Feeding Tube Placement in Elderly Patients. Ottawa Hospital Research Institute website. https://decisionaid.ohri.ca/docs/Tube_Feeding_DA/PDF/TubeFeeding.pdf. Published 2001.
43. Snyder EA, Caprio AJ, Wessell K, Lin FC, Hanson LC. Impact of a decision aid on surrogate decision-makers’ perceptions of feeding options for patients with dementia. J Am Med Dir Assoc. 2013;14(2):114-118.
44. Ersek M, Sefcik JS, Lin FC, Lee TJ, Gilliam R, Hanson LC. Provider staffing effect on a decision aid intervention. Clin Nurs Res. 2014;23(1):36-53.
45. Teno JM, Mitchell SL, Kuo SK, et al. Decision-making and outcomes of feeding tube insertion: a five-state study. J Am Geriatr Soc. 2011;59:881-886.
46. Frieden TR. A statement on antibiotic resistance and the threat to public health. US Department of Health and Human Services website. https://www.hhs.gov/asl/testify/2010/04/t20100428b.html. Published April 28, 2010. Accessed August 19, 2014.
47. Centers for Disease Control and Prevention. Antibiotic use in nursing homes. https://www.cdc.gov/getsmart/healthcare/learn-from-others/factsheets/nursing-homes.html. Updated November 5, 2013. Accessed August 19, 2014.
48. Leibovitz A, Plotnikov G, Habot B, Rosenberg M, Segal R. Pathogenic colonization of oral flora in frail elderly patients fed by nasogastric tube or percutaneous enterogastric tube. J Gerontol A Biol Sci Med Sci. 2003;58(1):52-55.
49. Leibovitz A, Dan M, Zinger J, Carmeli Y, Habot B, Segal R. Pseudomonas aeruginosa and the oropharyngeal ecosystem of tube-fed patients. Emerg Infect Dis. 2003;9(8):956-959.
50. Mody L, Maheshwari S, Galecki A, Kauffman CA, Bradley SF. Indwelling device use and antibiotic resistance in nursing homes: identifying a high-risk group. J Am Geriatr Soc. 2007;55(12):1921-1926.
51. Ho SS, Tse MM, Boost MV. Effect of an infection control programme on bacterial contamination of enteral feed in nursing homes. J Hosp Infect. 2012;82(1):49-55.
52. Braun UK, Rabeneck L, McCullough LB, et al. Decreasing use of percutaneous endoscopic gastrostomy tube feeding for veterans with dementia-racial differences remain. J Am Geriatr Soc. 2005;53:242-248.
