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

Published online by Cambridge University Press:  05 February 2009

Jenny T. van der Steen ,
Marie-José H. E. Gijsberts ,
Martien T. Muller ,
Luc Deliens  and
Ladislav Volicer
Jenny T. van der Steen*
Affiliation:
EMGO Institute, VU University Medical Center, Amsterdam, The Netherlands Department of Nursing Home Medicine, VU University Medical Center, Amsterdam, The Netherlands Department of Public and Occupational Health, VU University Medical Center, Amsterdam, The Netherlands
Marie-José H. E. Gijsberts
Affiliation:
EMGO Institute, VU University Medical Center, Amsterdam, The Netherlands Department of Nursing Home Medicine, VU University Medical Center, Amsterdam, The Netherlands Department of Public and Occupational Health, VU University Medical Center, Amsterdam, The Netherlands
Martien T. Muller
Affiliation:
Department of Nursing Home Medicine, VU University Medical Center, Amsterdam, The Netherlands
Luc Deliens
Affiliation:
EMGO Institute, VU University Medical Center, Amsterdam, The Netherlands Department of Public and Occupational Health, VU University Medical Center, Amsterdam, The Netherlands End-of-Life Care Research Group, Vrije Universiteit Brussels, Brussels, Belgium
Ladislav Volicer
Affiliation:
School of Aging Studies, University of South Florida, Tampa, U.S.A. and Charles University Medical School, Prague, Czech Republic
*
Correspondence should be addressed to: Dr. Jenny T. van der Steen, VU University Medical Center, EMGO Institute, Departments of Nursing Home Medicine, and Public and Occupational Health, van der Boechorststraat 7, 1081 BT Amsterdam, The Netherlands. Phone: +31-20-4449694; Fax: +31-20-4448387. Email: j.vandersteen@vumc.nl.
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Abstract

Background: The End-of-Life in Dementia (EOLD) scales comprise the most specific set of instruments developed for evaluations of patients' end of life by their families. It is not known whether the EOLD scales are useful for cross-national comparisons.

Methods: We used a mortality follow-back design in multi-center studies in the Netherlands (pilot study 2005–2007) and the U.S.A. (1999), and we compared EOLD Satisfaction With Care (SWC; last three months of life), Symptom Management (SM; last three months) and Comfort Assessment in Dying (CAD) scores for 54 Dutch and 76 U.S. nursing home residents.

Results: SWC total scores did not differ significantly between the Dutch and U.S. studies (31.9, SD 4.7 versus 30.4, SD 6.1), but three of ten items were rated more favorable for Dutch residents, as were SM total scores (29.1, SD 9.2 versus 20.4, SD 10.6). CAD total scores did not differ (32.0, SD 5.4 versus 30.5, SD 5.9, respectively), but the “well-being” subscale was rated more favorably for Dutch residents. Results were similar after adjustment for demographics and dementia severity.

Conclusion: The Dutch families rated end of life with dementia in nursing homes as somewhat better than did U.S. families. Although differences were small, the observed patterns were consistent. This suggests validity of the SM and CAD to assess differences in quality of dying and possible sensitivity to differences between countries or time frames. Larger, simultaneous, cross-national studies are needed to confirm usefulness of the scales and to detect areas which need improvement in the respective countries.

Keywords

dementianursing homesend of lifeEOLD scalessatisfactionterminal carepalliative care
Type
Research Article
Information
International Psychogeriatrics , Volume 21 , Issue 2 , April 2009 , pp. 321 - 329
Copyright
Copyright © International Psychogeriatric Association 2009

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References

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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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].CrossRefGoogle Scholar
Hales, S., Zimmermann, C. and Rodin, G. (2008). The quality of dying and death. Archives of Internal Medicine, 168, 912–918.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Higginson, I. J. (2005). End-of-life care: lessons from other nations. Journal of Palliative Medicine, 8 (Suppl. 1), S161–S173.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Munn, J. C. et al. (2007). Measuring the quality of dying in long-term care. Journal of the American Geriatrics Society, 55, 1371–1379.CrossRefGoogle ScholarPubMed
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
Turris, S. A. (2005). Unpacking the concept of patient satisfaction: a feminist analysis. Journal of Advanced Nursing, 50, 293–298.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
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].Google Scholar
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].Google ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Williams, B. (1994). Patient satisfaction: a valid concept? Social Science and Medicine, 38, 509–516.CrossRefGoogle ScholarPubMed