Hostname: page-component-cd9895bd7-gbm5v Total loading time: 0 Render date: 2024-12-31T17:11:57.152Z Has data issue: false hasContentIssue false
  • English
  • Français

Advance directives and physicians’ orders in nursing home residents with dementia in Flanders, Belgium: prevalence and associated outcomes

Published online by Cambridge University Press:  27 February 2012

An Vandervoort ,
Lieve van den Block ,
Jenny T. van der Steen ,
Robert Vander Stichele ,
Johan Bilsen  and
Luc Deliens
An Vandervoort*
Affiliation:
End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Brussels, Belgium
Lieve van den Block*
Affiliation:
End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Brussels, Belgium Department of Family Medicine, Vrije Universiteit Brussel, Brussels, Belgium
Jenny T. van der Steen
Affiliation:
EMGO Institute for Health and Care Research and Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, The Netherlands
Robert Vander Stichele
Affiliation:
End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Brussels, Belgium Heymans Institute of Pharmacology, Ghent University, Ghent, Belgium
Johan Bilsen
Affiliation:
End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Brussels, Belgium Department of Public Health, Vrije Universiteit Brussel, Brussels, Belgium
Luc Deliens
Affiliation:
End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Brussels, Belgium EMGO Institute for Health and Care Research and Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, The Netherlands
*
Correspondence should be addressed to: An Vandervoort or Prof. Dr. Lieve Van den Block, End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Laarbeeklaan 103, 1090 Jette, Brussels, Belgium. Phone: +32-(0)2 477 49 01, +32-(0)2 477 47 57 or +32-(0)2 477 43 10; Fax: +32-(0)2 477 47 11. Email: [email protected] or [email protected].
Correspondence should be addressed to: An Vandervoort or Prof. Dr. Lieve Van den Block, End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Laarbeeklaan 103, 1090 Jette, Brussels, Belgium. Phone: +32-(0)2 477 49 01, +32-(0)2 477 47 57 or +32-(0)2 477 43 10; Fax: +32-(0)2 477 47 11. Email: [email protected] or [email protected].
Get access

Abstract

Background: Advance care planning (ACP) is an important element of high-quality care in nursing homes, especially for residents having dementia who are often incompetent in decision-making toward the end of life. The aim of this study was describe the prevalence of documented ACP among nursing home residents with dementia in Flanders, Belgium, and associated clinical characteristics and outcomes.

Methods: All 594 nursing homes in Flanders were asked to participate in a retrospective cross-sectional postmortem survey in 2006. Participating homes identified all residents who had died over the last two months. A structured questionnaire was mailed to the nurses closely involved in the deceased resident's care regarding the diagnosis of dementia and documented care planning, i.e. advance patient directives, authorization of a legal representative, and general practitioners’ treatment orders (GP orders).

Results: In 345 nursing homes (58% response rate), nurses identified 764 deceased residents with dementia of whom 62% had some type of documented care plan, i.e. advance patient directives in 3%, a legal representative in 8%, and GP orders in 59%. Multivariate logistic regression showed that the presence of GP orders was positively associated with receiving specialist palliative care in the nursing home (OR 3.10; CI, 2.07–4.65). Chances of dying in a hospital were lower if there was a GP order (OR 0.38; CI, 0.21–0.70).

Conclusions: Whereas GP orders are relatively common among residents with dementia, advance patient directives and a legal representative are relatively uncommon. Nursing home residents receiving palliative care are more likely to have a GP order. GP orders may affect place of death.

Keywords

advance care planningdecision-makingend-of-life carepalliative carequality of dyingaged
Type
Research Article
Information
International Psychogeriatrics , Volume 24 , Issue 7 , July 2012 , pp. 1133 - 1143
Copyright
Copyright © International Psychogeriatric Association 2012

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Aerneart, A. and Delesie, L. (1999). Ijking van meetgegevens: RIZIV ADL-Index. Acta Hospitalia, 4, 19–31.Google Scholar
Allen, R. S. et al. (2003). Advance care planning in nursing homes: correlates of capacity and possession of advance directives. Gerontologist, 43, 309–317.CrossRefGoogle ScholarPubMed
Banerjee, S. (2010). Living well with dementia: development of the National Dementia Strategy for England. International Journal of Geriatric Psychiatry, 25, 917–922.CrossRefGoogle ScholarPubMed
Belgisch Staatsblad (2002). Wet betreffende de rechten van de patiënt 22 augustus 2002 [Law concerning patient rights in Belgium 22, August] 2002022737.Google Scholar
Black, B. S. et al. (2009). Surrogate decision makers’ understanding of dementia patients’ prior wishes for end-of-life care. Journal of Aging and Health, 21, 627–650.CrossRefGoogle ScholarPubMed
Bradley, E. H., Wetle, T. and Horwitz, S. M. (1998). The patient self-determination act and advance directive completion in nursing homes. Archives of Family Medicine, 7, 417–423.CrossRefGoogle ScholarPubMed
Brown, M. (2002). Participating in end of life decisions: the role of general practitioners. Australian Family Physician, 31, 60–62.Google ScholarPubMed
Cantor, M. D. and Pearlman, R. A. (2004). Advance care planning in long-term care facilities. Journal of the American Medical Directors Association, 5, S72–S80.CrossRefGoogle ScholarPubMed
Caplan, G. A., Meller, A., Squires, B., Chan, S. and Willett, W. (2006). Advance care planning and hospital in the nursing home. Age and Ageing, 35, 581–585.CrossRefGoogle ScholarPubMed
Chang, A. and Walter, L. C. (2010). Recognizing dementia as a terminal illness in nursing home residents: comment on “Survival and comfort after treatment of pneumonia in advanced dementia”. Archives of Internal Medicine, 170, 1107–1109.CrossRefGoogle ScholarPubMed
Chang, V. T., Hwang, S. S. and Feuerman, M. (2000). Validation of the Edmonton Symptom Assessment Scale. Cancer, 88, 2164–2171.3.0.CO;2-5>CrossRefGoogle ScholarPubMed
Chodosh, J. et al. (2004). Physician recognition of cognitive impairment: evaluating the need for improvement. Journal of the American Geriatrics Society, 52, 1051–1059.CrossRefGoogle ScholarPubMed
Curtis, J. R., Patrick, D. L., Caldwell, E. S. and Collier, A. C. (2000). Why don't patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians. Archives of Internal Medicine, 160, 1690–1696.CrossRefGoogle ScholarPubMed
Daaleman, T. P., Williams, C. S., Preisser, J. S., Sloane, P. D., Biola, H. and Zimmerman, S. (2009). Advance care planning in nursing homes and assisted living communities. Journal of the American Medical Directors Association, 10, 243–251.CrossRefGoogle ScholarPubMed
Dautzenberg, P. L., Hooyer, C., Schonwetter, R. S., Dermout, K. M., vd Veer, J. K. and Duursma, S. A. (1996). Dementia in resuscitation policy: a prospective study of a psychogeriatric ward in a Dutch general teaching hospital. Age and Ageing, 25, 234–238.CrossRefGoogle Scholar
de Gendt, C., Bilsen, J., Vander Stichele, R. and Deliens, L. (2010a). Advance care planning and dying in nursing homes. In End-of-life Care in Older People (pp. 114–133). Brussels: VUBPRESS Brussels University Press.Google Scholar
de Gendt, C., Bilsen, J., Vander Stichele, R. and Deliens, L. (2010b). Nursing home policies regarding advance care planning in Flanders, Belgium. European Journal of Public Health, 20, 189–194.CrossRefGoogle ScholarPubMed
DeLaGarza, V. W., Andersen, R. E., Mach, J. and Bennett, R. G. (2001). Improving rates of advance directive discussions among managed care nursing home enrollees. Journal of the American Medical Directors Association, 2, 105–109.CrossRefGoogle ScholarPubMed
de Lepeleire, J. A., Heyrman, J., Baro, F., Buntinx, F. and Lasuy, C. (1994). How do general practitioners diagnose dementia? Family Practice, 11, 148–152.CrossRefGoogle ScholarPubMed
Deschepper, R. et al. (2006). Communication on end-of-life decisions with patients wishing to die at home: the making of a guideline for GPs in Flanders, Belgium. British Journal of General Practice, 56, 14–19.Google ScholarPubMed
Deschepper, R. et al. (2008). Truth-telling at the end of life: a pilot study on the perspective of patients and professional caregivers. Patient Education and Counseling, 71, 52–56.CrossRefGoogle ScholarPubMed
Di Giulio, P., Toscani, F., Villani, D., Brunelli, C., Gentile, S. and Spadin, P. (2008). Dying with advanced dementia in long-term care geriatric institutions: a retrospective study. Journal of Palliative Medicine, 11, 1023–1028.CrossRefGoogle ScholarPubMed
Dobalian, A. (2006). Advance care planning documents in nursing facilities: results from a nationally representative survey. Archives of Gerontology and Geriatrics, 43, 193–212.CrossRefGoogle ScholarPubMed
Eliasson, A. H. et al. (1999). Impediments to writing do-not-resuscitate orders. Archives of Internal Medicine, 159, 2213–2218.CrossRefGoogle ScholarPubMed
Fried, T. R., Redding, C. A., Robbins, M. L., Paiva, A., O'Leary, J. R. and Iannone, L. (2010). Stages of change for the component behaviors of advance care planning. Journal of the American Geriatrics Society, 58, 2329–2336.CrossRefGoogle ScholarPubMed
Janofsky, J. S. and Rovner, B. W. (1993). Prevalence of advance directives and guardianship in nursing home patients. Journal of Geriatric Psychiatry and Neurology, 6, 214–216.CrossRefGoogle ScholarPubMed
Jones, A. L., Moss, A. J. and Harris-Kojetin, L. D. (2011). Use of advance directives in long-term care populations. NCHS Data Brief, 54, 1–8.Google Scholar
Jordan, A. (2010). Extending palliative care to patients with dementia. British Journal of Hospital Medicine, 71, 31–35.CrossRefGoogle ScholarPubMed
Katz, S. (1983). Assessing self-maintenance: activities of daily living, mobility, and instrumental activities of daily living. Journal of Geriatric Psychiatry and Neurology, 31, 721–727.Google ScholarPubMed
Koopmans, R. T., van der Sterren, K. J. and van der Steen, J. T. (2007). The “natural” endpoint of dementia: death from cachexia or dehydration following palliative care? International Journal of Geriatric Psychiatry, 22, 350–355.CrossRefGoogle ScholarPubMed
Lamberg, J. L., Person, C. J., Kiely, D. K. and Mitchell, S. L. (2005). Decisions to hospitalize nursing home residents dying with advanced dementia. Journal of the American Geriatrics Society, 53, 1396–1401.CrossRefGoogle ScholarPubMed
Lambourne, P. and Lambourne, A. (2001). Do not resuscitate policies: what do staff and relatives want for patients with severe dementia? International Journal of Geriatric Psychiatry, 16, 1107–1108.CrossRefGoogle ScholarPubMed
Levy, C. R., Fish, R. and Kramer, A. (2005). Do-not-resuscitate and do-not-hospitalize directives of persons admitted to skilled nursing facilities under the Medicare benefit. Journal of the American Geriatrics Society, 53, 2060–2068.CrossRefGoogle ScholarPubMed
Lliffe, S., de Lepeleire, J., van Hout, H., Kenny, G., Lewis, A. and Vernooij-Dassen, M. (2005). Understanding obstacles to the recognition of and response to dementia in different European countries: a modified focus group approach using multinational, multi-disciplinary expert groups. Aging and Mental Health, 9, 1–6.Google Scholar
Lopponen, M., Raiha, I., Isoaho, R., Vahlberg, T. and Kivela, S. L. (2003). Diagnosing cognitive impairment and dementia in primary health care: a more active approach is needed. Age and Ageing, 32, 606–612.CrossRefGoogle ScholarPubMed
Malcomson, H. and Bisbee, S. (2009). Perspectives of healthy elders on advance care planning. Journal of the American Academy of Nurse Practioners, 21, 18–23.CrossRefGoogle ScholarPubMed
Martin, D. K., Thiel, E. C. and Singer, P. A. (1999). A new model of advance care planning: observations from people with HIV. Archives of Internal Medicine, 159, 86–92.CrossRefGoogle ScholarPubMed
Maust, D. T., Blass, D. M., Black, B. S. and Rabins, P. V. (2008). Treatment decisions regarding hospitalization and surgery for nursing home residents with advanced dementia: the CareAD Study. International Psychogeriatrics, 20, 406–418.CrossRefGoogle ScholarPubMed
McAuley, W. J., Buchanan, R. J., Travis, S. S., Wang, S. and Kim, M. (2006). Recent trends in advance directives at nursing home admission and one year after admission. Gerontologist, 46, 377–381.CrossRefGoogle ScholarPubMed
Meeussen, K. et al. (2011). Advance care planning in Belgium and The Netherlands: a nationwide retrospective study via sentinel networks of general practitioners. Journal of Pain Symptom and Management, 42, 565–577.CrossRefGoogle ScholarPubMed
Messinger-Rapport, B. J. and Kamel, H. K. (2005). Predictors of do not resuscitate orders in the nursing home. Journal of the American Medical Directors Association, 6, 18–21.CrossRefGoogle Scholar
Mezey, M., Dubler, N. N., Mitty, E. and Brody, A. A. (2002). What impact do setting and transitions have on the quality of life at the end of life and the quality of the dying process? Gerontologist, 42 (Spec. Issue 3), 54–67.CrossRefGoogle ScholarPubMed
Mezey, M., Mitty, E., Rappaport, M. and Ramsey, G. (1997). Implementation of the Patient Self-Determination Act (PSDA) in nursing homes in New York City. Journal of the American Geriatrics Society, 45, 43–49.CrossRefGoogle ScholarPubMed
Mitchell, S. L., Kiely, D. K. and Hamel, M. B. (2004). Dying with advanced dementia in the nursing home. Archives of Internal Medicine, 164, 321–326.CrossRefGoogle ScholarPubMed
Mitchell, S. L., Teno, J. M., Intrator, O., Feng, Z. and Mor, V. (2007). Decisions to forgo hospitalization in advanced dementia: a nationwide study. Journal of the American Geriatrics Society, 55, 432–438.CrossRefGoogle ScholarPubMed
Mitchell, S. L. et al. (2009). The clinical course of advanced dementia. New England Journal of Medicine, 361, 1529–1538.CrossRefGoogle ScholarPubMed
Molloy, D. W. et al. (2000). Systematic implementation of an advance directive program in nursing homes: a randomized controlled trial. JAMA, 283, 1437–1444.CrossRefGoogle ScholarPubMed
Monturo, C. A. and Strumpf, N. E. (2007). Advance directives at end-of-life: nursing home resident preferences for artificial nutrition. Journal of the American Medical Directors Association, 8, 224–228.CrossRefGoogle ScholarPubMed
Morrison, R. S., Chichin, E., Carter, J., Burack, O., Lantz, M. and Meier, D. E. (2005). The effect of a social work intervention to enhance advance care planning documentation in the nursing home. Journal of the American Geriatrics Society, 53, 290–294.CrossRefGoogle ScholarPubMed
National End of Life Care Programme (2007). Advance Care Planning; A Guide for Health and Social Care Staff. Leicester: NHS NEoLCP.Google Scholar
National End of Life Care Programme (2010). The Differences Between General Care Planning and Decisions Made in Advance. Leicester: NHS NEoLCP.Google Scholar
Paquay, L. et al. (2004). The Qualidem project in Belgium. A two-center study on care needs and provision in dementia care: inclusion criteria and description of the population. Archives of Public Health, 125–142.Google Scholar
Parker, D., Porock, D. and Zweig, S. (2004). End-of-life care in U.S. nursing homes: a review of the evidence. Journal of the American Medical Directors Association, 5, 147–155.Google Scholar
Robinson, L. et al. (2010). Patient preferences for future care – how can Advance Care Planning become embedded into dementia care: a study protocol. BMC Geriatrics, 10, 2.CrossRefGoogle Scholar
Sachs, G. A., Shega, J. W. and Cox-Hayley, D. (2004). Barriers to excellent end-of-life care for patients with dementia. Journal of General Internal Medicine, 19, 1057–1063.CrossRefGoogle ScholarPubMed
Sampson, E. L. (2010). Palliative care for people with dementia. British Medical Bulletin, 96, 159–174.CrossRefGoogle ScholarPubMed
Silveira, M. J., Kim, S. Y. and Langa, K. M. (2010). Advance directives and outcomes of surrogate decision making before death. New England Journal of Medicine, 362, 1211–1218.CrossRefGoogle ScholarPubMed
Sulmasy, D. P., Sood, J. R. and Ury, W. A. (2004). The quality of care plans for patients with do-not-resuscitate orders. Archives of Internal Medicine, 164, 1573–1578.CrossRefGoogle ScholarPubMed
Teno, J. M. (2003). Advance care planning for frail, older persons. In Geriatric Palliative Care (pp. 307–313). Oxford: Oxford University Press.Google Scholar
Teno, J. M., Gozalo, P., Mitchell, S. L., Bynum, J. P., Dosa, D. and Mor, V. (2011). Terminal hospitalizations of nursing home residents: does facility increasing the rate of do not resuscitate orders reduce them? Journal of Pain and Symptom Management, 41, 1040–1047.CrossRefGoogle ScholarPubMed
Teno, J. M., Gruneir, A., Schwartz, Z., Nanda, A. and Wetle, T. (2007). Association between advance directives and quality of end-of-life care: a national study. Journal of the American Geriatrics Society, 55, 189–194.CrossRefGoogle ScholarPubMed
Tierney, W. M., Dexter, P. R., Gramelspacher, G. P., Perkins, A. J., Zhou, X. H. and Wolinsky, F. D. (2001). The effect of discussions about advance directives on patients’ satisfaction with primary care. Journal of General Internal Medicine, 16, 32–40.Google ScholarPubMed
Triplett, P. et al. (2008). Content of advance directives for individuals with advanced dementia. Journal of Aging and Health, 20, 583–596.CrossRefGoogle ScholarPubMed
van den Block, L., Deschepper, R., Bilsen, J., van Casteren, V. and Deliens, L. (2007a). Transitions between care settings at the end of life in Belgium. JAMA, 298, 1638–1639.CrossRefGoogle ScholarPubMed
van den Block, L et al. (2007b). Nationwide monitoring of end-of-life care via the Sentinel Network of General Practitioners in Belgium: the research protocol of the SENTI-MELC study. BMC Palliative Care, 6, 6.CrossRefGoogle ScholarPubMed
van der Steen, J. T. (2010). Dying with dementia: what we know after more than a decade of research. Journal of Alzheimer's Disease, 22, 37–55.CrossRefGoogle ScholarPubMed
van der Steen, J. T., Ooms, M. E., van der, W. G. and Ribbe, M. W. (2002). Pneumonia: the demented patient's best friend? Discomfort after starting or withholding antibiotic treatment. Journal of the American Geriatrics Society, 50, 1681–1688.CrossRefGoogle ScholarPubMed
Wolf-Klein, G., Pekmezaris, R., Chin, L. and Weiner, J. (2007). Conceptualizing Alzheimer's disease as a terminal medical illness. American Journal of Hospice and Palliative Care, 24, 77–82.CrossRefGoogle ScholarPubMed