The full spectrum of ethical issues in dementia care: Systematic qualitative review

British Journal of Psychiatry

Volumn 202, Issue 6, 2013, Pages 400-406

  Strech, Daniel ^a,b   Mertz, Marcel ^c   Knup̈pel, Hannes ^a   Neitzke, Gerald ^a   Schmidhuber, Martina ^d  

^a HANNOVER MEDICAL SCHOOL   (Germany)

^b UNIVERSITY OF ZURICH   (Switzerland)

^c UNIVERSITY OF MANNHEIM   (Germany)

^d BIELEFELD UNIVERSITY   (Germany)

Author keywords

[No Author keywords available]

Indexed keywords

DEMENTIA; HUMAN; MEDICAL ETHICS; PATIENT CARE; PATIENT DECISION MAKING; PATIENT INFORMATION; PRACTICE GUIDELINE; PROFESSIONALISM; QUALITATIVE ANALYSIS; REVIEW; SYSTEMATIC REVIEW; TREATMENT PLANNING;

DELIVERY OF HEALTH CARE; DEMENTIA; ETHICS, MEDICAL; HUMANS; MENTAL HEALTH SERVICES;

EID: 84878769882     PISSN: 00071250     EISSN: 14721465     Source Type: Journal    
DOI: 10.1192/bjp.bp.112.116335     Document Type: Review

References (107)

1. Post SG, Whitehouse PJ. Fairhill guidelines on ethics of the care of people with Alzheimer's disease: a clinical summary. Center for Biomedical Ethics, Case Western Reserve University and the Alzheimer's Association. J Am Geriatr Soc 1995; 43: 1423-9.
2. Nuffield Council on Bioethics. Dementia: Ethical Issues. Nuffield Council on Bioethics, 2009.
3. Oppenheimer C. Ethics in old age psychiatry. In Psychiatric Ethics (eds S Bloch, S Green): 409-33. Oxford University Press, 2009.
4. Rabins PV, Black BS. Ethical issues in geriatric psychiatry. Int Rev Psychiatry 2010; 22: 267-73.
5. Rai GS, Eccles J. Ethical issues in dementia. In Medical Ethics and the Elderly (ed. G Rai): 125-37. Radcliffe, 2009.
6. Bernat JL. Ethical issues in the care of patients with dementia. In Handbook of Clinical Neurology (eds C Duyckaerts, I Litvan): 115-30. Elsevier, 2008.
7. Baldwin C, Hughes J, Hope T, Jacoby R, Ziebland S. Ethics and dementia: mapping the literature by bibliometric analysis. Int J Geriatr Psychiatry 2003; 18: 41-54. (Pubitemid 36131226)
8. Hughes JC, Hope T, Savulescu J, Ziebland S. Carers, ethics and dementia: a survey and review of the literature. Int J Geriatr Psychiatry 2002; 17: 35-40. (Pubitemid 34121094)
9. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. Oxford University Press, 2008.
10. ABIM Foundation, ACP-ASIM Foundation, European Federation of Internal Medicine. Medical professionalism in the new millennium: a physicians' charter. Lancet 2002; 359: 520-2.
11. American Psychiatric Association. The Principles of Medical Ethics: With Annotations Especially Applicable to Psychiatry. APA, 2010.
12. Walaszek A. Clinical ethics issues in geriatric psychiatry. Psychiatr Clin North Am 2009; 32: 343-59.
13. Strauss A, Corbin JM. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. Sage Publications, 1998.
14. Hughes JC, Baldwin C. Ethical Issues in Dementia Care: Making Difficult Decisions. Jessica Kingsley, 2006.
15. Sofaer N, Strech D. Reasons why post-trial access to trial drugs should, or need not be ensured to research participants: a systematic review. Public Health Ethics 2011; 4: 160-84.
16. Strech D, Persad G, Marckmann G, Danis M. Are physicians willing to ration health care? Conflicting findings in a systematic review of survey research. Health Policy 2009; 90: 113-24.
17. Hughes JC, Baldwin C. Ethics and the old age psychiatry. In Oxford Textbook of Old Age Psychiatry (eds R Jacoby, C Oppenheimer, T Dening): 709-29. Oxford University Press, 2008.
18. Wetzstein V. Diagnose Alzheimer: Grundlagen einer Ethik der Demenz [Diagnosing Alzheimer's Disease: Fundamentals of Dementia Ethics]. Campus Verlag, 2005.
19. Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med 2009; 151: 264-9, W64.
20. Strech D, Sofaer N. How to write a systematic review of reasons. J Med Ethics 2012; 38: 121-6.
21. Sofaer N, Strech D. The need for systematic reviews of reasons. Bioethics 2012; 26: 315-28.
22. Strech D, Synofzik M, Marckmann G. Systematic reviews of empirical bioethics. Conceptual challenges and practical recommendations. J Med Ethics 2008; 34: 472-7.
23. McCullough LB, Coverdale JH, Chervenak FA. Constructing a systematic review for argument-based clinical ethics literature: the example of concealed medications. J Med Philos 2007; 32: 65-76.
24. Eriksson S, Hoglund AT, Helgesson G. Do ethical guidelines give guidance? A critical examination of eight ethics regulations. Camb Q Healthc Ethics 2008; 17: 15-29.
25. Schmidt R. Geschlechtsspezifische unterschiede der Alzheimer demenz [Gender-specific differences of Alzheimer's disease]. Neuropsychiatr 2008; 22: 1-15. (Pubitemid 351684887)
26. Murray LM, Boyd S. Protecting personhood and achieving quality of life for older adults with dementia in the U.S. health care system. J Aging Health 2009; 21: 350-73.
27. Graham JE, Ritchie K. Mild cognitive impairment: ethical considerations for nosological flexibility in human kinds. Philos Psychiatr Psychol 2006; 13: 31-43.
28. Diehl J, Fröstl H, Kurz A. Alzheimer-krankheit. Symptomatik, diagnose und therapie [Alzheimer's disease. Symptoms, diagnosis and therapy]. Z Med Ethik 2005; 51: 3-12.
29. Helmchen H, Lauter H. Dürfen Ärzte mit Demenzkranken Forschen? Forschungsbedraf und Einwiliigungsproblematik bei Demenz [Should Physicians Conduct Research with Dementia Patients? Research Needs and Consent Challenges in Dementia]. Thieme, 1995.
30. Füsgen I. Demenz. Praktischer Umgang mit der Hirnleistungsstö rung [Dementia: A Practice Guide for the Brain Disorder]. MMV Medizin Verlag, 1995.
31. Steeman E, de Casterlé BD, Godderis J, Grypdonck M. Living with early-stage dementia: a review of qualitative studies. J Adv Nurs 2006; 54: 722-38. (Pubitemid 43935060)
32. Kruse A. Lebensqualität demenzkranker menschen [Quality of life in people with dementia]. Z Med Ethik 2005; 51: 41-57.
33. Carpenter B, Dave J. Disclosing a dementia diagnosis: a review of opinion and practice, and a proposed research agenda. Gerontologist 2004; 44: 149-58. (Pubitemid 38541818)
34. Synofzik M. Effective, indicated-and yet without benefit? The goals of dementia drug treatment and the well-being of the patient [in German]. Z Gerontol Geriatr 2006; 39: 301-7. (Pubitemid 44356736)
35. Briggs S, Vernon M. Informed consent. In Medical Ethics and the Elderly (ed. G Rai): 19-29. Radcliffe, 2009.
36. Schwaber MJ, Carmeli Y. Antibiotic therapy in the demented elderly population: redefining the ethical dilemma. Arch Intern Med 2008; 168: 349-50. (Pubitemid 351347124)
37. Oliver D, Gee P. Communication, barriers to it and information sharing. In Medical Ethics and the Elderly (ed. G Rai): 49-61. Radcliffe, 2009.
38. Post SG. Respectare: moral respect for the lives of the deeply forgetful. In Dementia: Mind, Meaning and the Person (eds JC Hughes, S Louw, SR Sabat): 223-34. Oxford University Press, 2006.
39. Penrod J, Yu F, Kolanowski A, Fick DM, Loeb SJ, Hupcey JE. Reframing person-centered nursing care for persons with dementia. Res Theory Nurs Pract 2007; 21: 57-72.
40. Mahon MM, Sorrell JM. Palliative care for people with Alzheimer's diesease. Nurs Philos 2008; 9: 110-20.
41. Hughes JC, Sabat SR. The advance directive conjuring trick and the person with dementia. In Empirical Ethics in Psychiatry (eds G Widdershoven, J McMillan, T Hope): 123-40. Oxford University Press, 2008.
42. Bouman W. Sexuality in later life. In Oxford Textbook of Old Age Psychiatry (eds R Jacoby, C Oppenheimer, T Dening, A Thomas): 689-707. Oxford University Press, 2008.
43. Bavidge M. Aging and human nature. In Dementia: Mind, Meaning, and the Person (ed. JC Hughes): 41-53. Oxford University Press, 2006.
44. Rabins PV. Can suicide be a rational and ethical act in persons with early or pre-dementia? Am J Bioeth 2007; 7: 47-9. (Pubitemid 46904791)
45. Bowling A. Quality of life in healthcare decisions. In Medical Ethics and the Elderly (ed. G Rai): 149-56. Radcliffe, 2009.
46. Gove E, Sparr S, Dos Santos Bernardo AM, Cosgrave MP, Jansen S, Martensson B, et al. Recommendations on end-of-life care for people with dementia. J Nutr Health Aging 2010; 14: 136-9.
47. Jones WJ, McCullough LB, Richman BW. Advanced age, dementia, and an abdominal aneurysm: intervene? J Vasc Surg 2003; 37: 1132-3.
48. Baumrucker SJ, Davis MP, Paganini E, Morris GM, Stolick M, Sheldon JE. Case study: dementia, quality of life, and appropriate treatment. Am J Hosp Palliat Care 2005; 22: 385-91. (Pubitemid 41432867)
49. Menne HL, Whitlatch CJ. Decision-making involvement of individuals with dementia. Gerontologist 2007; 47: 810-9. (Pubitemid 351171902)
50. Weissenberger-Leduc M. Palliativpflege bei Demenz [Palliative Care in Dementia]. Springer, 2009.
51. Boyle G. Social policy for people with dementia in England: promoting human rights. Health Soc Care Community 2010; 18: 511-9.
52. Dworkin R. Autonomy and the demented self. In An Anthology of Psychiatric Ethics (eds S Green, S Bloch): 293-6. Oxford University Press, 2006.
53. Defanti CA, Tiezzi A, Gasparini M, Congedo M, Tiraboschi P, Tarquini D, et al. Ethical questions in the treatment of subjects with dementia. Part I. Respecting autonomy: awareness, competence and behavioural disorders. Neurol Sci 2007; 28: 216-31. (Pubitemid 47263845)
54. Luttrell S. Mental capacity and best interests. In Medical Ethics and the Elderly (ed. G Rai): 71-9. Radcliffe, 2009.
55. Holm S. Autonomy, authenticity, or best interest: everyday decision-making and persons with dementia. Med Health Care Philos 2001; 4: 153-9.
56. Jaworka A. Respecting the marking of agency. Philos Public Aff 1999; 28: 105-38.
57. Welie S. Patient incompetence in the practice of old age psychiatry: the significance of empirical research for the law. In Empirical Ethics in Psychiatry (ed. G Widdershoven): 231-47. Oxford University Press, 2008.
58. Chernoff R. Tube feeding patients with dementia. Nutr Clin Pract 2006; 21: 142-6. (Pubitemid 44314800)
59. Cornett PF, Hall JR. Issues in disclosing a diagnosis of dementia. Arch Clin Neuropsychol 2008; 23: 251-6.
60. Vollmann J. Advance directives in patients with Alzheimer's disease. Ethical and clinical considerations. Med Health Care Philos 2001; 4: 161-7.
61. Hartmann J, Förstl H, Kurz A. Suizid bei beginnender Demenz[Suicide in early-stage dementia]. Z Med Ethik 2009; 55: 343-50.
62. Schermer M. Nothing but the truth? On truth and deception in dementia care. Bioethics 2007; 21: 13-22. (Pubitemid 44952457)
63. Hofmann S. Demenz und Autonomie: Zur Realtionalität des Autonomiebegriffs in der Pflege bei Menschen mit Demenz [Dementia and Autonomy: The Challenge of the Concept of Autonomy in the Care of People with Dementia]. VDM, 2010.
64. Dworkin R. Life's Dominion: An Argument about Abortion, Euthanasia, and Individual Freedom. Knopf, 1993.
65. Dresser R. Dworkin on Dementia. In An Anthology of Psychiatric Ethics (eds S Green, S Bloch): 297-301. Oxford University Press, 2006.
66. Maio G. Verfügen über das Unverfügbare? Die Patientenverfügung als unvollkommene Antwort auf die ethische Herausforderung des Sterbens [Controlling the uncontrollable? The advance directive as the imperfect answer to the ethical challenge of dying]. Jahrb Wiss Ethik 2010; 15: 211-20.
67. Harvey M. Advance directives and the severely demented. J Med Philos 2006; 31: 47-64. (Pubitemid 43220894)
68. Rozzini R, Trabucchi M. Antibiotic therapy in elderly persons affected by severe dementia. Arch Intern Med 2008; 168: 2497-8.
69. Geppert CM, Andrews MR, Druyan ME. Ethical issues in artificial nutrition and hydration: a review. JPEN J Parenter Enteral Nutr 2010; 34: 79-88.
70. Gastmans C, Denier Y. What if patients with dementia use decision aids to make an advance euthanasia request? Am J Bioeth 2010; 10: 25-6.
71. Gedge EB. Collective moral imagination: making decisions for persons with dementia. J Med Philos 2004; 29: 435-50. (Pubitemid 40018359)
72. Goldsteen M. Empirical ethics in action in practices of dementia care. In Empirical Ethics in Psychiatry (eds G Widdershoven, J McMillan, T Hope): 95-106. Oxford University Press, 2008.
73. Barnes M, Brannelly T. Achieving care and social justice for people with dementia. Nurs Ethics 2008; 15: 384-95.
74. Kaldjian LC, Shinkunas LA, Bern-Klug M, Schultz SK. Dementia, goals of care, and personhood: a study of surrogate decision makers' beliefs and values. Am J Hosp Palliat Care 2010; 27: 387-97.
75. Kwok T, Twinn S, Yan E. The attitudes of Chinese family caregivers of older people with dementia towards life sustaining treatments. J Adv Nurs 2007; 58: 256-62.
76. Baldwin C. Family carers, ethics and dementia: an empirical study. In Empirical Ethics in Psychiatry (eds G Widdershoven, J McMillan, T Hope): 107-21. Oxford University Press, 2008.
77. Bolmsjo IA, Edberg AK, Sandman L. Everyday ethical problems in dementia care: a teleological model. Nurs Ethics 2006; 13: 340-59. (Pubitemid 44014730)
78. Synofzik M. Tube-feeding in advanced dementia. An evidence-based ethical analysis [in German]. Nervenarzt 2007; 78: 418-28. (Pubitemid 46599073)
79. Nagao N, Aulisio MP, Nukaga Y, Fujita M, Kosugi S, Youngner S, et al. Clinical ethics consultation: examining how American and Japanese experts analyze an Alzheimer's case. BMC Med Ethics 2008; 9: 2.
80. Schermer M. In search of 'good life' for demented elderly. Med Health Care Philos 2003; 6: 35-44.
81. Kastner U, Löbach R. Handbuch Demenz [The Dementia Handbook]. Urban & Fischer, 2007.
82. Lawrence V, Murray J, Samsi K, Banerjee S. Attitudes and support needs of Black Caribbean, south Asian and White British carers of people with dementia in the UK. Br J Psychiatry 2008; 193: 240-6.
83. Gatterer G, Croy A. Leben mit Demenz: Praxisbezogener Ratgeber für Pflege und Betreuung [Living with Dementia: Practice Guide for Care and Support]. Springer, 2004.
84. Jakobsen R, Sorlie V. Dignity of older people in a nursing home: narratives of care providers. Nurs Ethics 2010; 17: 289-300.
85. Cohen-Mansfield J, Bester A. Flexibility as a management principle in dementia care: the Adards example. Gerontologist 2006; 46: 540-4. (Pubitemid 44384702)
86. Reitinger E, Pleschberger S, Schumann F. Living and dying in community based housing for people with dementia. An exploratory qualitative study [in German]. Z Gerontol Geriatr 2010; 43: 285-90.
87. Yamamoto M, Aso Y. Placing physical restraints on older people with dementia. Nurs Ethics 2009; 16: 192-202.
88. Robinson D, O'Neill D. Ethics of driving assessment in dementia: care, competence and communication. In Medical Ethics and the Elderly (ed. G Rai): 101-9. Radcliffe, 2009.
89. Rosen AC, Bokde AL, Pearl A, Yesavage JA. Ethical, and practical issues in applying functional imaging to the clinical management of Alzheimer's disease. Brain Cogn 2002; 50: 498-519. (Pubitemid 36042972)
90. Kalis A, von Delden J, Schermer M. 'The good life' for demented persons living in nursing homes. Int Psychogeriatr 2004; 16: 429-39. (Pubitemid 40189309)
91. Villars H, Oustric S, Andrieu S, Baeyens JP, Bernabei R, Brodaty H, et al. The primary care physician and alzheimer's disease: an international position paper. J Nutr Health Aging 2010; 14: 110-20.
92. Sabat S. Subjectivity, the brain, life narratives and the ethical treatment of persons with Alzheimer's disease. Am J Bioeth 2009; 9: 23-5.
93. Morris C. Personal construct psychology and person-centred care. In Care-Giving in Dementia: Research and Applications (Vol 3) (eds GMM Jones, BL Miesen): 67-94. Brunner-Routledge, 2004.
94. Kalis A, van Delden J, Schermer M. Ideals regarding a good life for nursing home residents with dementia: views of professional caregivers. Nurs Ethics 2005; 12: 30-42. (Pubitemid 40115525)
95. Hughes J. Dementia and ethics: the view of informal carers. J R Soc Med 2002; 95: 242-6. (Pubitemid 34533787)
96. Richter J, Eisemann MR. Attitudinal patterns determining decision making in the treatment of the elderly: a comparison of the physicians and the nurses in Germany and Sweden. Intensive Care Med 2000; 26: 1326-33.
97. Rapoport MJ, Herrmann N, Molnar FJ, Man-Son-Hing M, Marshall SC, Shulman K, et al. Sharing the responsibility for assessing the risk of the driver with dementia. CMAJ 2007; 177: 599-601. (Pubitemid 47437057)
98. Landau R, Auslander GK, Werner S, Shoval N, Heinek J. Families' and professional caregivers' views of using advanced technology to track people with dementia. Qual Health Res 2010; 20: 409-19.
99. Kang HG. In situ monitoring of health in older adults: technologies and issues. J Am Geriatr Soc 2010; 58: 1579-86.
100. Landau R, Auslander GK, Werner S, Shoval N, Heinik J. Who should make the decision on the use of GPS for people with dementia? Aging Ment Health 2011; 15: 78-84.
101. Hokanen L. Point-counterpoint: is it ethical to give drugs covertly to people with dementia? No: covert medication is paternalistic. West J Med 2001; 174: 229.
102. Lamnari A. Point-counterpoint: is it ethical to give drugs to people with dementia? Yes: it is ethical if it is in their best interests. West J Med 2001; 174: 228.
103. Sayers GM, Rai G. The lawful use of restraints. In Medical Ethics and the Elderly (ed. G Rai): 139-47. Radcliffe, 2009.
104. Weiner C, Tabak N, Bergman R. The use of physical restraints for patients suffering from dementia. Nurs Ethics 2003; 10: 512-25. (Pubitemid 43934001)
105. Briggs S, Vernon M. Decisions on life-sustaining therapy: nutrition and fluid. In Medical Ethics and the Elderly (ed. G Rai): 31-46. Radcliffe, 2009.
106. Venturo L. Dignity, dining and dialogue: reviewing the literature on quality of life. Int J Older People Nurs 2010; 5: 228-34.
107. Werner S. Über Essen und Trinken demenziell erkrankter Bewohner: "Marmeladenstullen und Pdding am Abend? . . ." [About food and drink of dementia residents: 'Jam sandwiches and pudding in the evening?']. Pflegezeitschrift 2010; 63: 78-80.