'Because we see them naked' - nurses' experiences in caring for hospitalized patients with dementia: Considering artificial nutrition or hydration (ANH)

Bioethics

Volumn 26, Issue 6, 2012, Pages 285-295

  Bryon, Els ^a   Dierckx De Casterlé, Bernadette ^a   Gastmans, Chris ^a  

^a UNIVERSITY OF LEUVEN   (Belgium)

Author keywords

Artificial nutrition and or hydration; Dementia; End of life; Experiences; Nursing; Qualitative research

Indexed keywords

ADULT; AGED; ARTICLE; BELGIUM; CLINICAL TRIAL; CONFLICT; DECISION MAKING; DEMENTIA; EMOTION; ETHICS; FEMALE; FLUID THERAPY; HUMAN; MALE; MIDDLE AGED; MULTICENTER STUDY; NURSE PATIENT RELATIONSHIP; NURSING; NURSING STAFF; NUTRITIONAL SUPPORT; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; VERBAL COMMUNICATION;

ADULT; AGED; BELGIUM; CONFLICT (PSYCHOLOGY); DECISION MAKING; DEMENTIA; EMOTIONS; FEMALE; FLUID THERAPY; HUMANS; MALE; MIDDLE AGED; NARRATION; NURSE-PATIENT RELATIONS; NURSING STAFF, HOSPITAL; NUTRITIONAL SUPPORT; QUALITATIVE RESEARCH;

EID: 84862617362     PISSN: 02699702     EISSN: 14678519     Source Type: Journal    
DOI: 10.1111/j.1467-8519.2010.01875.x     Document Type: Article

References (67)

1. S.L. Mitchell. A 93-year-old Man with Advanced Dementia and Eating Problems. JAMA 2007; 298: 2527-2536.
2. T.E. Finucane, C. Christmas & K. Travis. Tube Feeding in Patients with Advanced Dementia: a Review of the Evidence. JAMA 1999; 282: 1365-1370
3. E.L. Sampson, B. Candy & L. Jones. Enteral Tube Feeding for Older People with Advanced Dementia. Cochrane Database Syst Rev 2009; 15: CD007209.
4. G. Bosshard et al. Forgoing Treatment at the End of Life in 6 European Countries. Arch Intern Med 2005; 165: 401-407
5. H.M. Buiting. Forgoing Artificial Nutrition of Hydration in Patients Nearing Death in six European countries. J Pain Symptom Manage 2007; 34: 305-314
6. P.T. Van Wigcheren et al. Starting Artificial Nutrition and Hydration in Patients with Dementia in the Netherlands: Frequencies, Patient Characteristics and Decisio-making Process. Aging Clin Exp Res 2007; 19: 26-33.
7. D. Casarett, J. Kapo & A. Caplan. Appropriate use of Artificial Nutrition and Hydration - Fundamental Principles andRecommendations. New Engl J Med 2005; 353: 2607-2612.
8. H.M. Buiting et al. Forgoing Artificial Nutrition of Hydration in Patients Nearing Death in six European countries. J Pain Symptom Manage 2007; 34: 305-314
9. M.R. Gillick. Rethinking the Role of Tube Feeding in Patients with Advanced Dementia. N Engl J of Med 2000; 342: 206-210.
10. Gillick, op. cit. note 5; Casarett et al., op. cit. note 4.
11. R. McCann. Lack of Evidence about Tube Feeding - Food for Thought. JAMA 1999; 282:1380-1381
12. M. Ersek. Artificial Nutrition and Hydration. JHPN 2003; 5: 221-229
13. P. van der Riet et al. Palliative Care Professionals' Perceptions of Nutrition and Hydration at the End of Life. Int J of Palliat Nurs 2008; 14: 145-151.
14. Finucane et al., op. cit. note 2; Gillick, op. cit. note 5; Sampson et al, op. cit note 2.
15. P. Triplett et al. Content of Advance Directives for Individuals with Advanced Dementia. J Aging Health 2008; 20: 583-596
16. M.E. de Boer et al. Advance Directives in Dementia: Issues of Validityand Effectiveness. Int Psychogeriatr 2010; 22: 201-208.
17. H.R. Pasman et al. Forgoing Artificial Nutrition and Hydration in Nursing Home Patients with Dementia: Patients, Decision-making, and Participants. Alzheimer Dis Assoc Disord 2004; 18: 154-162
18. H.R. Pasman et al. Participants in the Decision-making on Artificial Nutrition and Hydration to Demented Nursing Home Patients: a qualitative study. J Aging Stud 2004; 18: 321-335.
19. Buiting et al., op. cit. note 5.
20. Pasman et al., op. cit. note 10.
21. E. Bryon, B. Dierckx de Casterlé & C. Gastmans. Nurses' Attitudes towards Artificial Food or Fluid Administration in Patients with Dementia and in Terminally Ill Patients: a Review of the Literature. JME 2008; 34: 431-436.
22. C.P. Ferri et al. Global Prevalence of Dementia: a Delphi Consensus Study. Lancet 2005; 366: 2112-2117
23. O. Mashta. Number of people in UK with Dementia will More than Double by 2050. BMJ 2007; 334: 447
24. Alzheimer's Association. 2009 Alzheimer's Disease Facts and Figures. Alzheimers Dement2009; 5: 234-270.
25. E. Bryon, C. Gastmans & B. Dierckx de Casterlé. Decision-making about Artificial Feeding in End-of-life-care: Literature Review. J Adv Nursing; 63: 2-14.
26. Bryon et al., op. cit. note 15.
27. V. Todd et al. Percutaneous Endoscopic Gastrostomy (PEG): the Role and Perspective of Nurses. J of Clin Nurs 2005; 14: 187-194.
28. E. Konishi, A.J. Davis, T. Aiba. The Ethics of Withdrawing Artificial Food and Fluid from Terminally Ill Patients: an End-of-life Dilemma for Japanese Nurses and Families. Nurs Ethics 2002; 9: 7-19
29. Todd et al., op. cit. note 17.
30. Only 2 articles identified in this review considered ANH decision-making in nursing-home patient with dementia. Pasman et al., op. cit. note 102004
31. Pasman et al., 2004, op. cit. note 10. Though the majority of ANH decisions in patients with advanced dementia take place during hospitalization.
32. S. Kuo et al. Natural History of Feeding-tube use in Nursing Home Residents with Advanced Dementia. J Am Med Dir Assoc 2009; 10: 264-270
33. J.M. Teno etal. Hospital Characteristics Associated With Feeding Tube Placement in Nursing Home Residents With Advanced Cognitive Impairment. JAMA 2010; 303: 544-550.
34. B.G. Glaser & A.L. Strauss. 1999. The Discovery of Grounded Theory: Strategies for Qualitative Research. New Jersey: Aldine transaction; J. Corbin & A. Strauss. 2008. Basics of Qualitative Research. Techniques and Procedures for Developing Grounded Theory. California: Sage publications, Thousand Oaks.
35. Bryon et al., op. cit. note 15.
36. E. Bryon, C. Gastmans & B. Dierckx de Casterlé. Involvement of Hospital Nurses in Care Decisions related to Administration of Artificial Nutrition or Hydration (ANH) in Patients with Dementia: a Qualitative Study. Int J Nurs Stud 2010; 47: 1105-1116.
37. Bryon et al., op. cit. note 22.
38. Although in reality gradations exists and experiences varied within one case, we describe them - in front of the physician, the family and the nursing team- on the one hand, as positive, and on the other hand, as negative to simplify the reconstruction.
39. Bryon et al., op. cit. note 15.
40. C. Gastmans. Tube Feeding and Assisted Oral Feeding in Demented Patients with Eating Difficulties: a Clinical Ethical Approach. In Between Technology and Humanity. C. Gastmans, ed. Leuven: Leuven University Press: 197-216.
41. Bryon et al., op. cit. note 22.
42. M.U. Walker. 1998. Moral Understandings. A Feminist Study in Ethics. New York & London: Routledge.
43. H.M. Chochinov. 2007. Dignity and the Essence of Medicine: the A, B, C and D of Dignity Conserving Care. BMJ 2007; 335: 184-187.
44. Bryon et al., op. cit. note 22.
45. J. Tronto. 1993. Moral Boundaries. A Political Argument for an Ethic of Care. New York: Routledge.
46. Tronto, op. cit. note 31.
47. C. Gastmans. 2006. The Care Perspective in Healthcare Ethics. In Essenstials of Teaching and Learning in Nursing Ethics: Perspectives and Methods. A.J. Davis, V. Tschudin & L.D. Raeve, eds. Edinburgh: Elsevier: 135-148.
48. A. Bishop & S. Scudder. 1996. Nursing ethics: holistic caring practice. Boston: Jones and Bartlett Publishers.
49. V. James, D. Field. Who has the Power? Some Problems and Issues Affecting the Nursing Care of Dying Patients. Eur J Cancer Care 1996; 5: 73-80.
50. E. Schillebeeckx. Theologische draagwijdte van het magisteriële spreken over sociaal-politieke kwesties. Concilium 1968; 4: 21-40.
51. Bryon et al., op. cit. note 22.
52. S. Kävelmark et al. Living with Conflicts-ethical Dilemmas and Moral Distress in the Health Care System. Soc Sci Med 2004; 58: 1075-1084
53. K.M. Gutierrez. Critical Care Nurses' Perceptions of and Responses to Moral Distress. Dimens Crit Care Nurs 2005; 24: 229-241
54. K. Torjuul & V. Sorlie. Nursing is Different than Medicine: Ethical Difficulties in the Process of Care in Surgical Units. J Adv Nurs 2006; 56: 404-413.
55. A. Jameton. 1984. Nursing Practice: The Ethical Issues. NJ: Prentice-Hall Englewood Cliffs.
56. Kävelmark et al., op. cit. note 37; Gutierrez, op. cit. note 37; Torjuul & Sorlie, op. cit. note 37.
57. A. Titchen. 2000. Professional Craft Knowledge in Patient-Centered Nursing and the Facilitation of its Development. Doctoral dissertation. Oxford: Oxford University Press.
58. K. Oberle & D. Hughes. Doctors' and Nurses' Perceptions of Ethical Problems in End-of-life Decisions. J Adv Nurs 2001; 33: 707-715.
59. C. Gastmans. 2002. Towards Integrated Clinical Ethics Approach: Caring, Clinical and Organizational. In Healthy Thoughts: European Perspectives on Health Care Ethics. K. Lie, P.T. Schotsmans, B. Hansen & T. Meulenbergs, eds. Leuven: Peeters: 81-102.
60. C.A. Monturo & N.E. Strumpf. Advance Directives at End-of-life: Nursing Home Resident Preferences for Artificial Nutrition. J Am Med Dir Assoc 2007; 8: 224-222
61. Triplett et al., op. cit. note 9; de Boer et al., op. cit. note 9.
62. G.A. Widdershoven & R.L. Berghmans. Advance Directives in Dementia care: from Instructions to Instruments. Patient Educ Couns 2001; 44: 179-186.
63. R.P. Lopez et al. Nurses' Perspectives on Feeding Decisions for Nursing Home Residents with Advanced Dementia. J Clin Nurs 2010; 19: 632-638.
64. Gastmans, op. cit. note 44.
65. van der Riet et al., op. cit. note 7; Eggenberger & Nelms propose a nurse-lead consensus building approach to guide family decision-making regarding ANH in patients with dementia. This framework can be used to guide nurses in their family interactions
66. S.K. Eggenberger & T.P. Nelms. Artificial Hydration and Nutrition in Advanced Alzheimer's Disease: Facilitating Family Decision-making. J Clin Nurs 2004; 13: 61-67.
67. J. Lemiengre, B. Dierckx de Casterlé, Y. Denier, P. Schotsmans and C. Gastmans. How do Hospitals Deal with Euthanasia Requests in Flanders (Belgium)? A Content Analysis of Policy Documents. Patient Educ Couns 2008; 71: 293-301.