Restricted accessResearch articleFirst published online 2011-2
Perspectives of Community Members regarding Tube Feeding in Patients with End-Stage Dementia: Findings from African-American and Caucasian Focus Groups
Research has demonstrated that placement of permanent feeding tubes to provide artificial nutrition is more common among non-white populations, but there is a scarcity of research regarding why those differences may exist. The purpose of this study is to describe and understand community members' attitudes toward tube feeding and end-of-life decision-making. Four focus groups were convened in Greenville, NC. The 28 focus group participants were 11 African American and 17 Caucasian community members between ages 51 and 81. Two focus groups were held with Caucasian participants and two with African-American participants. Focus groups were recorded and transcribed, and qualitative analysis was performed using NVivo software.
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References
1.
BarnatoA. E.ChangC.-C. H.SayninaO., & GarberA. M. (2007). Influence of race on inpatient treatment intensity at the end of life. Journal of General Internal Medicine, 22(3), 338–345.
2.
BayerW.MallingerJ. B.KrishnanA., & ShieldsC. G. (2006). Attitudes toward life-sustaining interventions among ambulatory black and white patients. Ethnicity Disorders, 16, 914–919.
3.
BraunU. K.BeythR. J.FordM. E., & McCulloughL. B. (2008). Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making. Journal of General Internal Medicine, 23(3), 267–274.
4.
BraunU. K.RabeneckL.McCulloughL. B.UrbauerD. L.WrayN. P.LairsonD. R. (2005). Decreasing use of percutaneous endoscopic gastrostomy tube feeding for veterans with dementia—Racial differences remain. Journal of the American Geriatric Society, 53(2), 242–248.
5.
BrownJ. B. (1999). The use of focus groups in clinical research. In CrabtreeB. F. & MillerW. L. (Eds.), Doing qualitative research (2nd ed., pp. 109–124). Thousand Oaks, CA: Sage.
6.
CallahanC. M.HaagK. M.BuchananN. N., & NisiR. (1999). Decision-making for percutaneous endoscopic gastrostomy among older adults in a community setting. Journal of the American Geriatric Society, 47(9), 1105–1109.
7.
CaralisP. V.DavisB.WrightK., & MarcialE. (1993). The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatments, and euthanasia. Journal of Clinical Ethics, 4(2), 155–165.
8.
CogenR.PattersonB.ChavinS.CogenJ.LandsbergL., & PosnerJ. (1992). Surrogate decision-maker preferences for medical care of severely demented nursing home patients. Archives of Internal Medicine, 152(9), 1885–1888.
9.
FinucaneT. E., & BynumJ. P. W. (1996). Use of tube feeding to prevent aspiration pneumonia. Lancet, 348, 1421–1424.
10.
FinucaneT. E.ChristmasC., & TravisK. (1999). Tube feeding in patients with advanced dementia: A review of the evidence. Journal of the American Medical Association, 282(14), 1365–1370.
11.
ForbesS.Bern-KlugM., & GessertC. (2000). End-of-life decision making for nursing home residents with dementia. Journal of Nursing Scholarship, 32(3), 251–258.
12.
GarityJ. (2006). Caring for a family member with Alzheimer's disease: Coping with caregiver burden post-nursing home placement. Journal of Gerontology and Nursing, 32(6), 39–48.
13.
GarrettJ. M.HarrisR. P.NorburnJ. K.PatrickD. L., & DanisM. (1993). Life-sustaining treatments during terminal illness: Who wants what?Journal of General Internal Medicine, 8(7), 361–368.
14.
GessertC. E.CurryN. M., & RobinsonA. (2001). Ethnicity and end-of-life care: The use of feeding tubes. Ethnicity Disorders, 11(1), 97–106.
15.
GessertC. E.MosierM. C.BrownE. F., & FreyB. (2000). Tube feeding in nursing home residents with severe and irreversible cognitive impairment. Journal of the American Geriatric Society, 48(12), 1593–1600.
16.
GillickM. R. (2000). Rethinking the role of tube feeding in patients with advanced dementia. New England Journal of Medicine, 342(3), 206–210.
17.
GrantM. D., & HermanS. (2004). Ethnic and geographic variation in gastrostomy placement among hospitalized older patients. Journal of the National Medical Association, 96(10), 1346–1349.
18.
GreinerK. A.PereraS., & AhluwaliaJ. S. (2003). Hospice usage by minorities in the last year of life: Results from the National Mortality Followback Survey. Journal of the American Geriatric Society, 51(7), 970–978.
19.
HoppF. P., & DuffyS. A. (2000). Racial variations in end-of-life care. Journal of the American Geriatric Society, 48(6), 658–663.
20.
KahanaB.DanA.KahanaE., & KercherK. (2004). The personal and social context of planning for end-of-life care. Journal of the American Geriatric Society, 52(7), 1163–1167.
21.
KawM., & SekasG. (1994). Long-term follow-up of consequences of percutaneous endoscopic gastrostomy (PEG) tubes in nursing home patients. Digestive Disease Science, 39(4), 738–743.
22.
Kayser-JonesJ. (1995). Decision making in the treatment of acute illness in nursing homes: Framing the decision problem, treatment plan, and outcome. Medical Anthropology Quarterly, 9(2), 236–256.
23.
KiernanS. P. (2006). Last rights: Rescuing the end of life from the medical system. New York: St. Martin's Press.
24.
KwakJ., & HaleyW. E. (2005). Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist, 15(5), 634–641.
25.
MansfieldC. J.MitchellJ., & KingD. E. (2002). The doctor as God's mechanic? Beliefs in the southeastern United States. Social Science Medicine, 54, 399–409.
26.
McCannR. (1999). Lack of evidence about tube feeding—Food for thought. Journal of the American Medical Association, 282(14), 1380–1381.
27.
McNamaraE. P., & KennedyN. P. (2001). Tube feeding patients with advanced dementia: An ethical dilemma. Proceedings of the Nutrition Society, 60, 179–185.
28.
MitchellS. L.KielyD. K., & LipsitzL. A. (1997). The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment. Archives of Internal Medicine, 157(3), 327–332.
29.
MitchellS. L.TenoJ. M.IntratorO.FengZ., & MorV. (2007). Decisions to forgo hospitalization in advanced dementia: A nationwide study. Journal of the American Geriatric Society, 55(3), 432–438.
30.
MitchellS. L.TenoJ. M.RoyJ.KabumotoG., & MorV. (2003). Clinical and organizational factors associated with feeding tube use among nursing home residents with advanced cognitive impairment. Journal of the American Medical Association, 290(1), 73–80.
31.
MitchellS. L., & TetroeJ. M. (2000). Survival after percutaneous endoscopic gastrostomy placement in older persons. Journal of Gerontology Series A: Biological Science and Medical Science, 55(12), M735–M739.
32.
MorV.PapandonatosG., & MillerS. C. (2005). End-of-life hospitalization for African American and non-Latino white nursing home residents: Variation by race and a facility's racial composition. Journal of Palliative Medicine, 8(1), 58–68.
33.
OwenJ. E.GoodeK. T., & HaleyW. E. (2001). End of life care and reactions to death in African-American and white family caregivers of relatives with Alzheimer's disease. Omega, 43(4), 349–361.
34.
PerkinsH. S.GeppertC. M.GonzalesA.CortezJ. D., & HazudaH. P. (2002). Cross-cultural similarities and differences in attitudes about advance care planning. Journal of General Internal Medicine, 17(1), 48–57.
35.
PhippsE.TrueG.HarrisD.ChongU.TesterW.ChavinS. I. (2003). Approaching the end of life: Attitudes, preferences, and behaviors of African-American and white patients and their family caregivers. Journal of Clinical Oncology, 21(3), 549–554.
36.
ShegaJ. W.HoughamG. W.StockingC. B.Cox-HayleyD., & SachsG. A. (2003). Barriers to limiting the practice of feeding tube placement in advanced dementia. Journal of Palliative Medicine, 6(6), 885–893.
37.
ShepardsonL. B.GordonH. S.IbrahimS. A.HarperD. L., & RosenthalG. E. (1999). Racial variation in the use of do-not-resuscitate orders. Journal of General Internal Medicine, 14(1), 15–20.
38.
SmithA. K.DavisR. B., & KrakauerE. L. (2007). Differences in the quality of the patient-physician relationship among terminally ill African-American and white patients: Impact on advance care planning and treatment preferences. Journal of General Internal Medicine, 22(11), 1579–1582.
39.
Somogyi-ZaludE.LikourezosA.ChichinE., & OlsonE. (2001). Surrogate decision makers' attitudes towards tube feeding in the nursing home. Archives of Gerontology and Geriatrics, 32, 101–111.
40.
TenoJ. M.MorV.DeSilvaD.KabumotoG.RoyJ., & WetleT. (2002). Use of feeding tubes in nursing home residents with severe cognitive impairment. Journal of the American Medical Association, 287(24), 3211–3212.
41.
TrueG.PhippsE. J.BraitmanL. E.HarralsonT.HarrisD., & TesterW. (2005). Treatment preferences and advance care planning at end of life: The role of ethnicity and spiritual coping in cancer patients. Annals of Behavioral Medicine, 30(2), 174–179.
42.
VolandesA. E.Paasche-OrlowM.GillickM. R.CookE. F.ShaykevichS.AbboE. D. (2008). Health literacy not race predicts end-of-life care preferences. Journal of Palliative Medicine, 11(5), 754–762.
43.
WelchL.TenoJ. M., & MorV. (2005). End-of-life care in black and white: Race matters for medical care of dying patients and their families. Journal of the American Geriatric Society, 53(7), 1145–1153.
44.
WhetstoneL. M., & CummingsD. M. (2002). Assessing health in our rural communities. North Carolina Medical Journal, 63(1), 11–17.
