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Achieving consensus and controversy around applicability of palliative care to dementia

Published online by Cambridge University Press:  10 June 2015

Jenny T. van der Steen ,
Lukas Radbruch ,
Marike E. de Boer ,
Saskia Jünger ,
Julian C. Hughes ,
Phil Larkin ,
Dianne Gove ,
Anneke L. Francke ,
Raymond T.C.M. Koopmans  and
Pam Firth
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Jenny T. van der Steen*
Affiliation:
Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Van der Boechorststraat 7, 1081BT Amsterdam, the Netherlands
Lukas Radbruch
Affiliation:
Department of Palliative Medicine, University Hospital Bonn, Bonn, Germany; and Palliative Care Centre, Malteser Hospital Bonn/Rhein-Sieg, Von-Hompesch-Str. 1, 53123 Bonn, Germany
Marike E. de Boer
Affiliation:
Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Van der Boechorststraat 7, 1081BT Amsterdam, the Netherlands
Saskia Jünger
Affiliation:
Institute of General Medicine, Hannover Medical School, Carl-Neuberg-Straße 1, 30625 Hannover, Germany
Julian C. Hughes
Affiliation:
Northumbria Healthcare NHS Foundation Trust, North Tyneside General Hospital, Rake Lane, North Shields, Tyne and Wear, NE29 8NH and Policy, Ethics and Life Science (PEALS) Research Centre, Newcastle University, UK
Phil Larkin
Affiliation:
UCD School of Nursing, Midwifery and Health Systems and Our Lady's Hospice and Care Services, UCD College of Health Sciences, Belfield, Dublin 4, Ireland
Dianne Gove
Affiliation:
Alzheimer Europe, 14 rue Dicks, 1417 Luxembourg, Luxembourg
Anneke L. Francke
Affiliation:
Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Van der Boechorststraat 7, 1081BT Amsterdam, the Netherlands Public and Occupational Health, NIVEL, Netherlands Institute for Health Services Research, PO Box 1568 3500 BN Utrecht, the Netherlands
Raymond T.C.M. Koopmans
Affiliation:
Radboud University Medical Center, Department of Primary and Community Care, P.O. Box 9101, postal code 117 ELG, 6500 HB Nijmegen, the Netherlands; and Joachim & Anna, Center for Specialized Geriatric Care (Waalboog), Groesbeekseweg 327, 6523 PA Nijmegen, the Netherlands
Pam Firth
Affiliation:
5 Langham Close, St Albans, AL49YH, UK
Ladislav Volicer
Affiliation:
University of South Florida, School of Aging Studies, Tampa, 4202 E.Fowler Ave, FL 34639, USA
Cees M.P.M. Hertogh
Affiliation:
Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Van der Boechorststraat 7, 1081BT Amsterdam, the Netherlands
*
Correspondence should be addressed to: Jenny T. van der Steen, PhD; VU University Medical Center, EMGO Institute for Health and Care Research, Department of General Practice & Elderly Care Medicine, Van der Boechorststraat 7, 1081 BT Amsterdam, the Netherlands. Phone: +31-20-4449694; Email: [email protected].
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Abstract

Background:

People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision.

Methods:

To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations.

Results:

Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable.

Conclusions:

Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a “palliative” label versus the benefits of applying palliative care early.

Keywords

comfort careconsensusdementiaend of lifeguidelinespalliative care
Type
Research Article
Information
International Psychogeriatrics , Volume 28 , Issue 1 , January 2016 , pp. 133 - 145
Copyright
Copyright © International Psychogeriatric Association 2015 

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References

Akushevich, I., Kravchenko, J., Ukraintseva, S., Arbeev, K. and Yashin, A. I. (2012). Age patterns of incidence of geriatric disease in the U.S. elderly population: medicare-based analysis. Journal of the American Geriatrics Society, 60, 323–327. doi: 10.1111/j.1532-5415.2011.03786.x.Google ScholarPubMed
Alemayehu, E. et al. (1991). Variability in physicians’ decisions on caring for chronically ill elderly patients: an international study. CMAJ: Canadian Medical Association Journal, 144, 1133–1138.Google ScholarPubMed
Brayne, C., Gao, L., Dewey, M. and Matthews, F. E.; Medical Research Council Cognitive Function and Ageing Study Investigators (2006). Dementia before death in ageing societies–the promise of prevention and the reality. PLoS Medicine, 3, e397.CrossRefGoogle ScholarPubMed
Davies, N. et al.; IMPACT research team (2014). Quality palliative care for cancer and dementia in five European countries: some common challenges. Aging & Mental Health, 18, 400–410. doi: 10.1080/13607863.2013.843157. CrossRefGoogle ScholarPubMed
European Association for Palliative Care (EAPC) (2009). White Paper on standards and norms for hospice and palliative care in Europe: part 1. European Journal of Palliative Care, 16, 278–289.Google Scholar
Ferri, C. P. et al.; Alzheimer's Disease International (2005). Global prevalence of dementia: a Delphi consensus study. Lancet, 366, 2112–2117.CrossRefGoogle ScholarPubMed
Froud, R. et al. (2011). Reporting outcomes of back pain trials: a modified Delphi study. European Journal of Pain, 15, 1068–1074. doi: 10.1016/j.ejpain.2011.04.015.Google Scholar
Hinkka, H., Kosunen, E., Metsänoja, R., Lammi, U. K. and Kellokumpu-Lehtinen, P. (2002). Factors affecting physicians’ decisions to forgo life-sustaining treatments in terminal care. Journal of Medical Ethics, 28, 109–114.CrossRefGoogle ScholarPubMed
Iqbal, S. and Pipon-Young, L. (2009). The Delphi method. The Psychologist, 22, 598–600.Google Scholar
Johnson, T. P. and Wislar, J. S. (2012). Response rates and nonresponse errors in surveys. JAMA, 307, 1805–1806.CrossRefGoogle ScholarPubMed
Lee, D. and Begley, C. E. (2012). Physician attitudes towards chronic disease management in the USA. Health Services Management Research, 25, 60–67. doi: 10.1258/hsmr.2012.011026.CrossRefGoogle ScholarPubMed
Meijering, J. V., Kampen, J. K. and Tobi, H. (2013). Quantifying the development of agreement among experts in Delphi studies. Technological Forecasting & Social Change, 80, 1607–1614.CrossRefGoogle Scholar
Molloy, D. W. et al. (1991). Factors affecting physicians’ decisions on caring for an incompetent elderly patient: an international study. CMAJ: Canadian Medical Association Journal, 145, 947–952.Google ScholarPubMed
Nakanishi, M. et al. (2015). An evaluation of palliative care contents in national dementia strategies in reference to the European Association for Palliative Care white paper. International Psychogeriatrics, February 13, Epublished ahead of print.CrossRefGoogle Scholar
National Consensus Project for Quality Palliative Care (2013). Clinical Practice Guidelines for Quality Palliative Care, 3rd edn, Pittsburgh PA, USA: National Consensus Project. ISBN 1-934654-35-3.Google Scholar
National Palliative Care Research Center (NPCRC). What is Palliative Care? http://www.npcrc.org/content/15/About-Palliative-Care.aspx; last accessed 3 February 2015.Google Scholar
Powell, C. (2003). The Delphi technique: myths and realities. Journal of Advanced Nursing, 41, 376–382.CrossRefGoogle ScholarPubMed
Procter, E. (2012). Collaboration between the specialties in provision of end-of-life care for all in the UK: reality or utopia? International Journal of Palliative Nursing, 18, 339–347.CrossRefGoogle ScholarPubMed
Quill, T. E. and Abernethy, A. P. (2013). Generalist plus specialist palliative care–creating a more sustainable model. The New England Journal of Medicine, 368, 1173–1175. doi: 10.1056/NEJMp1215620.CrossRefGoogle ScholarPubMed
Treves, T. A. and Korczyn, A. D. (2012). Modeling the dementia epidemic. CNS Neuroscience & Therapeutics, 18, 175–181. doi: 10.1111/j.1755-5949.2011.00242.x.CrossRefGoogle ScholarPubMed
United Nations Statistics Division (2013). Composition of Macro Geographical (continental) Regions, Geographical Sub-regions, and Selected Economic and other Groupings. http://unstats.un.org/unsd/methods/m49/m49regin.htm; last accessed 3 February 2015.Google Scholar
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. doi: 10.3233/JAD-2010-100744.CrossRefGoogle ScholarPubMed
van der Steen, J. T., Hertogh, C. M., de Graas, T., Nakanishi, M., Toscani, F. and Arcand, M. (2013a). Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation. Journal of Medical Ethics, 39, 104–109. doi: 10.1136/medethics-2012-100903.CrossRefGoogle ScholarPubMed
van der Steen, J. T., Onwuteaka-Philipsen, B. D., Knol, D. L., Ribbe, M. W. and Deliens, L. (2013b). Caregivers’ understanding of dementia predicts patients’ comfort at death: a prospective observational study. BMC Medicine, 11, 105. doi: 10.1186/1741-7015-11-105.CrossRefGoogle ScholarPubMed
van der Steen, J. T. et al. (2014a). White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine, 28, 197–209. doi: 10.1177/0269216313493685.CrossRefGoogle ScholarPubMed
van der Steen, J. T., Ribbe, M. W., Deliens, L., Gutschow, G. and Onwuteaka-Philipsen, B. D. (2014b). Retrospective and prospective data collection compared in the Dutch End Of Life in Dementia (DEOLD) study. Alzheimer Disease and Associated Disorders, 28, 88–94. doi: 10.1097/WAD.0b013e318293b380.CrossRefGoogle ScholarPubMed
van der Steen, J. T. et al. (2014c). Factors associated with initiation of advance care planning in dementia: a systematic review. Journal of Alzheimer's Disease, 40, 743–757. doi: 10.3233/JAD-131967.CrossRefGoogle ScholarPubMed
World Health Organization (WHO) (2002). Definition of Palliative Care. http://www.who.int/cancer/palliative/definition/en/; last accessed 24 February 2015.Google Scholar
World Health Organization (WHO) (2012). Dementia: A Public Health Priority. Geneva, Switzerland. ISBN 978 92 4 156445 8.Google Scholar
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