Improving decision-making for feeding options in advanced dementia: A randomized, controlled trial

Journal of the American Geriatrics Society

Volumn 59, Issue 11, 2011, Pages 2009-2016

  Hanson, Laura C ^a,b   Carey, Timothy S ^b   Caprio, Anthony J ^a   Lee, Tae Joon ^c   Ersek, Mary ^d   Garrett, Joanne ^a   Jackman, Anne ^b   Gilliam, Robin ^b   Wessell, Kathryn ^b   Mitchell, Susan L ^e  

^a UNIVERSITY OF NORTH CAROLINA SCHOOL OF MEDICINE   (United States)

^b UNIVERSITY OF NORTH CAROLINA   (United States)

^c EAST CAROLINA UNIVERSITY   (United States)

^d UNIVERSITY OF PENNSYLVANIA   (United States)

^e Hebrew SeniorLife Institute for Aging Research   (United States)

Author keywords

decision making; dementia; nursing home; nutrition

Indexed keywords

AGED; ARTICLE; CAUCASIAN; CONTROLLED STUDY; DECISION MAKING; DECISIONAL CONFLICT SCALE; DEMENTIA; DYSPHAGIA; FEEDING; FEEDING DISORDER; FEMALE; HEALTH CARE PERSONNEL; HUMAN; MAJOR CLINICAL STUDY; MALE; NURSING HOME; RANDOMIZED CONTROLLED TRIAL; RATING SCALE; SCORING SYSTEM;

DECISION MAKING; DEMENTIA; FEEDING METHODS; FEMALE; HUMANS; MALE; NORTH CAROLINA; NURSING HOMES; PREVALENCE; SEVERITY OF ILLNESS INDEX; TREATMENT OUTCOME;

EID: 81755181902     PISSN: 00028614     EISSN: 15325415     Source Type: Journal    
DOI: 10.1111/j.1532-5415.2011.03629.x     Document Type: Article

References (46)

1. Hebert LI, Scherr PA, Bienias JL, et al. Alzheimer's disease in the US population: Prevalence estimates using the 2000 census. Arch Neurol 2003; 60: 1119-1122.
2. Larson EB, Shadlen MF, Wang L, et al. Survival after initial diagnosis of Alzheimer disease. Ann Intern Med 2004; 140: 501-509.
3. Boustani M, Peterson CB, Hanson LC, et al. Screening for dementia syndrome: A review of the evidence. Ann Intern Med, 2003; 138: 927-937.
4. Reisberg B, Ferris SH, De Leon MJ, et al. The Global Deterioration Scale for assessment of primary degenerative dementia. Am J Psychiatry 1982; 139: 1136-1139.
5. Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med 2009; 361: 1529-1538.
6. Wolf-Klein GP, Silverstone FA,. Weight loss in Alzheimer's disease: An international review of the literature. Int Psychogeriatr 1994; 6: 135-142.
7. White H, Pieper C, Schmader K, et al. A longitudinal analysis of weight change in Alzheimer's disease. J Am Geriatr Soc 1997; 45: 531-532.
8. Volicer L, Seltzer B, Rheaume Y, et al. Eating difficulties in patients with probable dementia of the Alzheimer type. J Geriatr Psychiatry Neurol 1989; 2: 188-195.
9. Givens JL, Kiely DK, Carey K, et al. Health care proxies of nursing home residents with advanced dementia: Decisions they confront and their satisfaction with decision-making. J Am Geriatr 2009; 57: 1149-1155.
10. Lopez RP, Amella EJ,. Time travel: The lived experience of providing feeding assistance to a family member with dementia. Res Gerontol Nurs 2011; 4: 127-134.
11. 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.
12. Sloane PD, Zimmerman S, Williams CS, et al. Dying with dementia in long-term care. Gerontologist 2008; 48: 741-751.
13. Mitchell SL, Kiely DK, Lipsitz LA,. The risk factors and impact on survival of feeding tubes in nursing home residents with advanced dementia. Arch Intern Med 1997; 157: 327-332.
14. Meier DE, Aronheim JC, Morris J, et al. High short-term mortality in hospitalized patients with advanced dementia: Lack of benefit of tube feeding. Arch Intern Med 2001; 161: 594-599.
15. Murphy LM, Lipman TO,. Percutaneous endoscopic gastrostomy does not prolong survival in patients with dementia. Arch Intern Med 2003; 163: 1351-1353.
16. Sampson EL, Candy B, Jones L,. Enteral tube feeding for older people with advanced dementia. Available at. Accessed May 20, 2009.
17. Carey TS, Hanson LC, Garrett JM, et al. Expectations and outcomes of gastric feeding tubes. Am J Med 2006; 119: 527.
18. Hanson LC, Garrett JM, Lewis C, et al. Physicians' expectations of benefit from tube feeding. J Palliat Med 2008; 11: 1130-1134.
19. Brett AS, Rosenberg JC,. The adequacy of informed consent for placement of gastrostomy tubes. Arch Intern Med 2001; 161: 745-748.
20. Lewis CL, Hanson LC, Golin C, et al. Surrogates' perceptions about feeding tube placement decisions. Patient Educ Couns 2006; 61: 246-252.
21. Elwyn G, O'Connor A, Stacey D, et al.; International Patient Decision Aid Standards (IPDAS) Collaboration. Developing a quality criteria framework for patient decision aids: Online international Delphi consensus process. BMJ 2006; 333: 417.
22. O'Connor AM, Rostom A, Fiset V, et al. Decision aids for patients facing health treatment or screening decisions: A systematic review. BMJ 1999; 319: 731-734.
23. Whelan T, Levine M, Willan A, et al. Effects of a decision aid on knowledge and treatment decision making for breast cancer surgery. JAMA 2004; 292: 235-441.
24. Pignone M, Harris R, Kinsinger L,. Videotape-based decision aid for colon cancer screening: A randomized controlled trial. Ann Intern Med 2000; 133: 761-769.
25. Barry MJ,. Health decision aids to facilitate shared decision making in office practice. Ann Intern Med 2002; 136: 127-135.
26. Volandes AE, Paasche-Orlow MK, Barry MJ, et al. Video decision support tool for advance care planning in dementia: A randomized controlled trial. BMJ 2009; 338: b2159.
27. Mitchell SL, Tetroe J, O'Connor AM,. A decision aid for long-term tube-feeding in cognitively impaired older persons. J Am Geriatr Soc 2001; 49: 313-316.
28. Hanson LC, Gilliam R, Lee TJ,. Successful clinical trials research in nursing homes: The Improving Decision Making Study. Clin Trials 2010; 7: 735-743.
29. Morris JN, Fries BE, Mehr DR, et al. MDS cognitive performance scale. J Gerontol 1994; 49: M174-M182.
30. O'Connor AM,. Validation of a Decisional Conflict Scale. Med Decis Making 1995; 15: 25-30.
31. Brehaut JC, O'Connor AM, Wood TJ, et al. Validation of a decisional regret scale. Med Decis Making 2003; 23: 281-292.
32. Holmes-Rovner M, Kroll J, Schmitt N, et al. Patient satisfaction with health care decisions: The Satisfaction with Decision Scale. Med Decis Making 1996; 16: 58-64.
33. Mitchell SL, Kiely DK, Hamel MB, et al. Estimating prognosis for nursing home residents with advanced dementia. JAMA 2004; 291: 2734-2740.
34. O'Connor A, Bennett CL, Stacey D, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2009; 8: CD001431. Available at Accessed December 2009.
35. Man-Son-Hing M, Laupacis A, O'Connor AM, et al. A patient decision aid regarding antithrombotic therapy for stroke prevention in atrial fibrillation: A randomized controlled trial. JAMA 1999; 282: 737-743.
36. El-Jawahri A, Podgurski LM, Eichner AF, et al. Use of video to facilitate end-of-life discussions with patients with cancer: A randomized controlled trial. J Clin Oncol 2010; 28: 305-310.
37. Azoulay E, Pochard F, Chevret S, et al. Impact of a family information leaflet on effectiveness of information provided to family members of intensive care unit patients: A multicenter, prospective, randomized, controlled trial. Am J Respir Crit Care Med 2002; 165: 438-442.
38. Vandemheen KL, O'Connor A, Bell SC, et al. Randomized trial of a decision aid for patients with cystic fibrosis considering lung transplantation. Am J Respir Crit Care Med 2009; 180: 761-768.
39. Mitchell SL, Teno JM, Miller SC, et al. A national study of the location of death for older persons with dementia. J Am Geriatr Soc 2005; 53: 299-305.
40. Teno JM,. Facts on dying. Available at Accessed November 2, 2009.
41. Birch D, Draper J,. A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia. J Clin Nursing 2008; 17: 1144-1163.
42. Castle NG, Engberg J,. Staff turnover and quality of care in nursing homes. Med Care 2005; 43: 616-626.
43. Donoghue C, Castle N,. Leadership styles of nursing home administrators and their association with staff turnover. Gerontologist 2009; 49: 166-174.
44. Levy C, Epstein A, Landry LA, et al. Physicians Practices in Nursing Homes: Final Report. U.S. Department of Health and Human Services. Available at Accessed April 12, 2009.
45. Braun UK, Rabeneck L, McCullough LB, et al. Decreasing use of percutanous endoscopic gastrostomy tube feeding for veterans with dementia-racial differences remain. J Am Geriatr Soc 2005; 53: 242-248.
46. Monteleoni C, Clark E,. Using rapid-cycle quality improvement methodology to reduce feeding tubes in patients with advanced dementia: Before and after study. BMJ 2004; 329: 491-494.