Evaluations of end of life with dementia by families in Dutch and U.S. nursing homes

International Psychogeriatrics

Volumn 21, Issue 2, 2009, Pages 321-329

  Van Der Steen, Jenny T ^a   Gijsberts, Marie José H E ^a   Muller, Martien T ^a   Deliens, Luc ^a,b   Volicer, Ladislav ^c,d  

^a VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^b VRIJE UNIVERSITEIT BRUSSEL   (Belgium)

^c UNIVERSITY OF SOUTH FLORIDA   (United States)

^d CHARLES UNIVERSITY   (Czech Republic)

Author keywords

Dementia; End of life; EOLD scales; Nursing homes; Palliative care; Satisfaction; Terminal care

Indexed keywords

AGED; ARTICLE; CLINICAL ARTICLE; COMFORT ASSESSMENT IN DYING SCALE; CONTROLLED STUDY; DEMENTIA; END OF LIFE IN DEMENTIA SATISFACTION WITH CARE SCALE; FAMILY; FEMALE; HEALTH CARE QUALITY; HUMAN; MALE; NETHERLANDS; NURSING HOME; PALLIATIVE THERAPY; RATING SCALE; SCORING SYSTEM; SYMPTOM MANAGEMENT SCALE; TERMINAL CARE; UNITED STATES; WELLBEING; CAREGIVER; CLINICAL TRIAL; COMPARATIVE STUDY; CONSUMER; CULTURAL FACTOR; DAILY LIFE ACTIVITY; HOME FOR THE AGED; MORTALITY; MULTICENTER STUDY; NURSING; PILOT STUDY; PROSPECTIVE STUDY; PSYCHOLOGICAL ASPECT; QUESTIONNAIRE;

ACTIVITIES OF DAILY LIVING; AGED; AGED, 80 AND OVER; CAREGIVERS; CONSUMER SATISFACTION; CROSS-CULTURAL COMPARISON; DEMENTIA; FEMALE; HOMES FOR THE AGED; HUMANS; MALE; NETHERLANDS; NURSING HOMES; PALLIATIVE CARE; PILOT PROJECTS; PROSPECTIVE STUDIES; QUESTIONNAIRES; TERMINAL CARE; UNITED STATES;

EID: 65649092993     PISSN: 10416102     EISSN: 1741203X     Source Type: Journal    
DOI: 10.1017/S1041610208008399     Document Type: Article

References (36)

1. Aminoff, B. Z., Purits, E., Noy, S. and Adunsky, A. (2004). Measuring the suffering of end-stage dementia: reliability and validity of the Mini-Suffering State Examination. Archives of Gerontology and Geriatrics, 38, 123-130. (Pubitemid 38096304)
2. Bellelli, G., Frisoni, G. B., Bianchetti, A. and Trabucchi, M. (1997). The Bedford Alzheimer Nursing Severity scale for the severely demented: validation study. Alzheimer Disease and Associated Disorders, 11, 71-77. (Pubitemid 27271976)
3. Berlowitz, D. R., Du, W., Kazis, L., Lewis, S. (1995). Health-related quality of life of nursing home residents: differences in patient and provider perceptions. Journal of the American Geriatrics Society, 43, 799-802.
4. Biola, H., Sloane, P. D., Williams, C. S., Daaleman, T. P., Williams, S. W. and Zimmerman, S. (2007). Physician communication with family caregivers of long-term care residents at the end of life. Journal of the American Geriatrics Society, 55, 846-856. (Pubitemid 47011038)
5. Brandt, H. E., Deliens, L., van der Steen, J. T., Ooms, M. E., Ribbe, M. W. and van der Wal, G. (2005). The last days of life of nursing home residents with and without dementia assessed with the palliative care outcome scale. Palliative Medicine, 2005, 19, 334-342. (Pubitemid 40872764)
6. Caprio, A. J. et al. (2008). Pain, dyspnea, and the quality of dying in long-term care. Journal of the American Geriatrics Society, 56, 683-688.
7. Casarett, D. J., Crowley, R., Hirschman, K. B. (2003). Surveys to assess satisfaction with end-of-life care: does timing matter? Journal of Pain and Symptom Management, 25, 128-132. (Pubitemid 36183290)
8. Engel, S. E., Kiely, D. K. and Mitchell, S. L. (2006). Satisfaction with end-of-life care for nursing home residents with advanced dementia. Journal of the American Geriatrics Society, 54, 1567-1572. (Pubitemid 44564153)
9. Gijsberts, M. J. H. E., van der Steen, J. T., Muller, M. T. and Deliens, L. (2008). [End-of-life with dementia for residents of anthroposophic and traditional Dutch nursing homes]. Tijdschrift voor Gerontologie en Geriatrie, 39, 256-264 [in Dutch].
10. Hales, S., Zimmermann, C. and Rodin, G. (2008). The quality of dying and death. Archives of Internal Medicine, 168, 912-918.
11. Hearn, J. and Higginson, I. J. (1999). Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. Quality in Health Care, 8, 219-227.
12. Helton, M. R., van der Steen, J. T., Daaleman, T. P., Gamble, G. R. and Ribbe, M. W. (2006). A cross-cultural study of physician treatment decisions for demented nursing home patients who develop pneumonia. Annals of Family Medicine, 4, 221-227.
13. Higginson, I. J. (2005). End-of-life care: lessons from other nations. Journal of Palliative Medicine, 8 (Suppl. 1), S161-S173.
14. Hoek, J. F., Penninx, B. W., Ligthart, G. J. and Ribbe, M. W. (2000). Health care for older persons, a country profile: the Netherlands. Journal of the American Geriatrics Society, 48, 214-217. (Pubitemid 30106528)
15. Kiely, D. K., Volicer, L., Teno, J., Jones, R. N., Prigerson, H. G. and Mitchell, S. L. (2006). The validity and reliability of scales for the evaluation of end-of-life care in advanced dementia. Alzheimer Disease and Associated Disorders, 20, 176-181. (Pubitemid 44259792)
16. Lubart, E. et al. (2004). Satisfaction with the care of institutionalized psychogeriatric patients, as reflected by a survey of their relatives. Archives of Gerontology and Geriatrics, 38, 45-50. (Pubitemid 37346381)
17. McPherson, C. J. and Addington-Hall, J. M. (2003). Judging the quality of care at the end of life: can proxies provide reliable information? Social Science and Medicine, 56, 95-109.
18. Mitchell, S. L., Teno, J. M., Miller, S. C. and Mor, V. (2005). A national study of the location of death for older persons with dementia. Journal of the American Geriatrics Society, 53, 299-305. Erratum in: Journal of the American Geriatrics Society, 2005, 53, 741.
19. Mitchell, S. L., Kiely, D. K., Jones, R. N., Prigerson, H., Volicer, L. and Teno, J. M. (2006). Advanced dementia research in the nursing home: the CASCADE study. Alzheimer Disease and Associated Disorders, 20, 166-175. (Pubitemid 44259791)
20. Munn, J. C. et al. (2007). Measuring the quality of dying in long-term care. Journal of the American Geriatrics Society, 55, 1371-1379. (Pubitemid 47329233)
21. Rich, S., Williams, C. and Zimmerman, S. (2007). Family-staff member agreement in reports about end of life in assisted living and nursing homes. The Gerontologist, 47 (Special No. 1), 158. Abstract.
22. Steel, K. et al. (2003). The RAI-PC: an assessment instrument for palliative care in all settings. American Journal of Hospice and Palliative Care, 20, 211-219. (Pubitemid 39420598)
23. Stewart, A. L., Teno, J., Patrick, D. L. and Lynn, J. (1999). The concept of quality of life of dying persons in the context of health care. Journal of Pain and Symptom Management, 17, 93-108. (Pubitemid 29096209)
24. Teno, J. (2000). Toolkit of Instruments to Measure End-of-Life Care. After-Death Bereaved Family Interview: Nursing Home Version. http://www.chcr.brown.edu/pcoc/linkstoinstrumhtm.htm.
25. Turris, S. A. (2005). Unpacking the concept of patient satisfaction: a feminist analysis. Journal of Advanced Nursing, 50, 293-298.
26. van der Steen, J. T. et al. (2004). Treatment of nursing home residents with dementia and lower respiratory tract infection in the United States and in the Netherlands: an ocean apart. Journal of the American Geriatrics Society, 52, 691-699.
27. van der Steen, J., Ribbe, M., Deliens, L., Koopmans, R. and Onwuteaka-Philipsen, B. (2007a). End of life with dementia and prospective studies. The Gerontologist, 47 (Special No. 1), 169-170. Abstract.
28. van der Steen, J. T. and Ribbe, M. W. (2007b). Sterven met dementie: wat weten wij ervan? [Dying with dementia: what do we know about it?] Tijdschrift voor Gerontologie en Geriatrie, 38, 288-297 [in Dutch].
29. van der Steen, J. T., Kruse, R. L., van der Wal, G., Mehr, D. R. and Ribbe, M. W. (2007c). [Treatment of pneumonia in nursing home residents with severe dementia: for residents with poor prognosis, a more reserved approach in The Netherlands and more active treatment in the United States]. Nederlands Tijdschrift voor Geneeskunde, 151, 915-919 [in Dutch].
30. van der Steen, J. T. et al. (2008a). Benefits and pitfalls of pooling datasets from comparable observational studies: combining US and Dutch nursing home studies. Palliative Medicine, 22, 750-759.
31. van der Steen, J. T. et al. (2008b). Treatments in patients dying with dementia: a cross-cultural perspective. Journal of the American Geriatrics Society, 56, 565-567. (Pubitemid 351327930)
32. van der Steen, J. T., Gijsberts, M-J. H. E., Knol, D. L., Deliens, L. and Muller, M. T. (2009). Ratings of symptoms and comfort in dementia patients at the end of life: comparison of nurses and families. Unpublished paper, obtainable from corresponding author. VU University Medical Center, EMGO Institute, Amsterdam.
33. Volicer, L., Hurley, A. C., Lathi, D. C. and Kowall, N. W. (1994). Measurement of severity in advanced Alzheimer's disease. Journal of Gerontology, 49, M223-M226. (Pubitemid 24282305)
34. Volicer, L., Hurley, A. C. and Blasi, Z. V. (2001). Scales for evaluation of end-of-life care in dementia. Alzheimer Disease and Associated Disorders, 15, 194-200. (Pubitemid 33117035)
35. Volicer, L., Hurley, A. C. and Blasi, Z. V. (2003). Characteristics of dementia end-of-life care across care settings. American Journal of Hospice and Palliative Care, 20, 191-200. (Pubitemid 39420595)
36. Williams, B. (1994). Patient satisfaction: a valid concept? Social Science and Medicine, 38, 509-516.