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Physicians' perceptions of suffering in people with dementia at the end of life

Published online by Cambridge University Press:  23 January 2017

Jenny T. van der Steen Open the ORCID record for Jenny T. van der Steen [Opens in a new window] ,
Luc Deliens ,
Raymond T.C.M. Koopmans  and
Bregje D. Onwuteaka-Philipsen
Jenny T. van der Steen*
Affiliation:
Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands Department of Primary and Community Care, Radboud university medical center, Nijmegen, the Netherlands
Luc Deliens
Affiliation:
End-of-Life Care Research Group, Vrije Universiteit Brussels and Ghent University, Brussels, Belgium
Raymond T.C.M. Koopmans
Affiliation:
Department of Primary and Community Care, Radboud university medical center, Nijmegen, the Netherlands Radboudumc Alzheimer Centre Nijmegen, the Netherlands Joachim en Anna Center for Specialized Geriatric Care, Nijmegen, the Netherlands
Bregje D. Onwuteaka-Philipsen
Affiliation:
VU University Medical Center, EMGO Institute for Health and Care Research, Department of Public and Occupational Health, Expertise Center of Palliative Care, Amsterdam, the Netherlands
*
Address correspondence and reprint requests to Jenny T. van der Steen, Department of Public Health and Primary Care, Leiden University Medical Center, Hippocratespad 21, P.O. Box 9600, 2300 RC Leiden, the Netherlands. E-Mail: jtvandersteen@lumc.nl.
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Abstract

Objective:

Our aim was to describe physicians' perceptions of the suffering of their patients who are dying with dementia, many of whom are incompetent with regard to decision making and have difficulty with communicating about the source of their distress and with identifying related factors.

Method:

We analyzed data from the nationally representative observational Dutch End-of-Life in Dementia (DEOLD) cohort study (2007–2011), which involved 34 long-term care facilities. A total of 103 physicians completed questionnaires about 330 patients with dementia who had died in a participating facility. Suffering during the last six hours of life was defined as “a patient being disturbed by or aware of symptoms,” “suffering until the end or death was a struggle”—all related to objective indicators of lack of comfort. We employed generalized estimating equation models to assess associations of suffering with the characteristics of physicians and patients, the patient's death, and the decision-making process.

Results:

In 13.8% of cases, the physician felt that the patient had suffered. An unexpected death and death with pneumonia were strongly (an odds ratios close to 6) associated with suffering, and suffering was also independently associated with the physician's perception of worse quality of end-of-life care, death with cardiovascular disease, a less experienced physician, no palliative sedation, and a younger patient.

Significance of Results:

Most patients with dementia did not suffer during their final hours of life, according to their physicians. There are a number of factors associated with suffering, among them death with pneumonia and unexpected death. We may not be able to have much influence on death from pneumonia, but quality of care and an unexpected death are reasonable targets for intervention. Earlier identification of the beginning of the dying process would allow time to better prepare for approaching death, which would provide a source of comfort.

Keywords

DementiaPalliative careEnd of lifeQuality of lifeNursing homes

Information

Type
Original Articles
Information
Palliative & Supportive Care , Volume 15 , Issue 5 , October 2017 , pp. 587 - 599
Copyright
Copyright © Cambridge University Press 2017 

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References

REFERENCES

Aminoff, B.Z., Purits, E., Noy, S., et al. (2004). Measuring the suffering of end-stage dementia: Reliability and validity of the Mini-Suffering State Examination. Archives of Gerontology and Geriatrics, 38(2), 123–130.CrossRefGoogle ScholarPubMed
Arnold, B.L., Lloyd, L.S. & von Gunten, C.F. (2016). Physicians' reflections on death and dying on completion of a palliative medicine fellowship. Journal of Pain and Symptom Management, 51(3), 633–639. Epub ahead of print Nov 3, 2015.CrossRefGoogle ScholarPubMed
Black, B.S., Fogarty, L.A., Phillips, H., et al. (2009). Surrogate decision makers' understanding of dementia patients' prior wishes for end-of-life care. Journal of Aging and Health, 21(4), 627–650. Epub ahead of print Mar 5. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2832743/pdf/nihms174768.pdf.Google Scholar
Bolt, E.E., Snijdewind, M.C., Willems, D.L., et al. (2015). Can physicians conceive of performing euthanasia in case of psychiatric disease, dementia or being tired of living? Journal of Medical Ethics, 41(8), 592–598.CrossRefGoogle ScholarPubMed
Boogaard, J.A., van Soest-Poortvliet, M.C., Anema, J.R., et al. (2013). Feedback on end-of-life care in dementia: The study protocol of the FOLLOW-UP project. BMC Palliative Care, 12(1), 12–29. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3751417/pdf/1472-684X-12-29.pdf.Google Scholar
Brayne, C., Gao., L., Dewey, M., et al. (2006). Dementia before death in ageing societies: The promise of prevention and the reality. PLoS Medicine, 3(10), e397. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1626550/pdf/pmed.0030397.pdf.Google Scholar
Caron, C., Griffith, J. & Arcand, M. (2005). Decision making at the end of life in dementia: How family caregivers perceive their interactions with health care providers in long-term-care settings. Journal of Applied Gerontology, 24(3), 231–247.Google Scholar
de Boer, M.E., Hertogh, C.M., Dröes, R.M., et al. (2007). Suffering from dementia, the patient's perspective: A review of the literature. International Psychogeriatrics, 19(6), 1021–1039. Epub ahead of print Aug 30.CrossRefGoogle ScholarPubMed
de Boer, M.E., Dröes, R.M., Jonker, C., et al. (2011). Advance directives for euthanasia in dementia: How do they affect resident care in Dutch nursing homes? Experiences of physicians and relatives. Journal of the American Geriatrics Society, 59(6), 989–996. Epub ahead of print Jun 7.Google Scholar
De Roo, M.L., van der Steen, J.T., Galindo Garre, F., et al. (2014). When do people with dementia die peacefully? An analysis of data collected prospectively in long-term care settings. Palliative Medicine, 28(3), 210–219. Epub ahead of print Nov 29, 2013.Google Scholar
Glare, P.A. & Sinclair, C.T. (2008). Palliative medicine review: Prognostication. Journal of Palliative Medicine, 11(1), 84–103.CrossRefGoogle ScholarPubMed
Helton, M.R., van der Steen, J.T., Daaleman, T.P., et al. (2006). A cross-cultural study of physician treatment decisions for demented nursing home patients who develop pneumonia. Annals of Family Medicine, 4(3), 221–227. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1479435/pdf/0040221.pdf.CrossRefGoogle ScholarPubMed
Helton, M.R., Cohen, L.W., Zimmerman, S., et al. (2011). The importance of physician presence in nursing homes for residents with dementia and pneumonia Journal of the American Medical Directors Association, 12(1), 68–73. Epub ahead of print Aug 11, 2010.CrossRefGoogle ScholarPubMed
Hendriks, S.A., Smalbrugge, M., Hertogh, C.M., et al. (2014). Dying with dementia: Symptoms, treatment, and quality of life in the last week of life. Journal of Pain and Symptom Management, 47(4), 710–720. Epub ahead of print Jul 31, 2013. Available from http://www.jpsmjournal.com/article/S0885-3924(13)00332-1/pdf.Google Scholar
Hendriks, S.A., Smalbrugge, M., Galindo-Garre, F., et al. (2015). From admission to death: Prevalence and course of pain, agitation, and shortness of breath, and treatment of these symptoms in nursing home residents with dementia. Journal of the American Medical Directors Association, 16(6), 475–481. Epub ahead of print Feb 23.CrossRefGoogle ScholarPubMed
Hendriks, S.A., Smalbrugge, M., van Gageldonk-Lafeber, A.B., et al. (2016). Pneumonia, intake problems, and survival among nursing home residents with variable stages of dementia in the Netherlands: Results from a prospective observational study. Alzheimer Disease and Associated Disorders, Epub ahead of print Nov 15.Google Scholar
Hirschman, K.B., Kapo, J.M. & Karlawish, J.H. (2008). Identifying the factors that facilitate or hinder advance planning by persons with dementia. Alzheimer Disease and Associated Disorders, 22(3), 293–298. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2666935/pdf/nihms95236.pdf.Google Scholar
Koopmans, R.T., Lavrijsen, J.C., Hoek, J.F., et al. (2010). Dutch elderly care physician: A new generation of nursing home physician specialists. Journal of the American Geriatrics Society, 58(9), 1807–1809.CrossRefGoogle ScholarPubMed
Koopmans, R.T., van der Steen, J.T. & Bakker, C. (2015). Palliative care in people with young-onset dementia (YOD), an undiscovered area! Journal of the American Medical Directors Association, 16(12), 1008–1009. Epub ahead of print Aug 18.CrossRefGoogle ScholarPubMed
Kouwenhoven, P.S., Raijmakers, N.J., van Delden, J.J., et al. (2015). Opinions about euthanasia and advanced dementia: A qualitative study among Dutch physicians and members of the general public. BMC Medical Ethics, 16, 7.Google Scholar
Meeussen, K., Van den Block, L., Echteld, M., et al. (2012). Older people dying with dementia: A nationwide study. International Psychogeriatrics, 24(10), 1581–1591. Epub ahead of print May 30.Google Scholar
Mitchell, S.L., Teno, J.M., Kiely, D.K., et al. (2009). The clinical course of advanced dementia. The New England Journal of Medicine, 361(16), 1529–1538. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2778850/pdf/nihms-158283.pdf.Google Scholar
Morris, J.N., Fries, B.E., Mehr, D.R., et al. (1994). MDS Cognitive Performance Scale. Journal of Gerontology, 49(4), M174–M182.Google Scholar
Munn, J.C., Hanson, L.C., Zimmerman, S., et al. (2006). Is hospice associated with improved end-of-life care in nursing homes and assisted living facilities? Journal of the American Geriatrics Society, 54(3), 490–495.Google Scholar
Putman, M.S., Yoon, J.D., Rasinski, K.A., et al. (2013). Intentional sedation to unconsciousness at the end of life: Findings from a national physician survey. Journal of Pain and Symptom Management, 46(3), 326–334. Epub ahead of print Dec 7, 2012. Available from http://www.jpsmjournal.com/article/S0885-3924(12)00748-8/pdf.Google Scholar
Reisberg, B., Ferris, S.H., de Leon, M.J., et al. (1982). The Global Deterioration Scale for assessment of primary degenerative dementia. The American Journal of Psychiatry, 139(9), 1136–1139.Google ScholarPubMed
Rietjens, J.A., Voorhees, J.R., van der Heide, A., et al. (2014). Approaches to suffering at the end of life: The use of sedation in the USA and Netherlands. Journal of Medical Ethics, 49(4), 235–240. Epub ahead of print Sep 14, 2012.Google Scholar
Royal Dutch Medical Association, Committee on National Guideline for Palliative Sedation (2009). Guideline for palliative sedation [in English]. Available from http://www.knmg.nl/Publicaties/KNMGpublicatie-levenseinde/66978/Guideline-for-palliative-sedation-2009.htm.Google Scholar
Russ, T.C., Stamatakis, E., Hamer, M., et al. (2012). Association between psychological distress and mortality: Individual participant pooled analysis of 10 prospective cohort studies. BMJ, 345, e4933. Available from http://www.bmj.com/content/bmj/345/bmj.e4933.full.pdf.Google Scholar
Siouta, N., van Beek, K., Preston, N., et al. (2016). Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease: A systematic literature review of European guidelines and pathways. BMC Palliative Care, 15(1), 18. Available from http://www.insup-c.eu/documents/EAPC2015-InSup-C-abstract-systematic-literature-review.pdf.CrossRefGoogle ScholarPubMed
Smyre, C.L., Yoon, J.D., Rasinski, K.A., et al. (2015). Limits and responsibilities of physicians addressing spiritual suffering in terminally ill patients. Journal of Pain and Symptom Management, 49(3), 562–569. Epub ahead of print Aug 15, 2014.CrossRefGoogle ScholarPubMed
Steinhauser, K.E., Clipp, E.C., McNeilly, M., et al. (2000). In search of a good death: Observations of patients, families, and providers. Annals of Internal Medicine, 132(10), 825–832. Available from http://annals.org/aim/article/713475/search-good-death-observations-patients-families-providers.Google Scholar
Tomlinson, E., Spector, A., Nurock, S., et al. (2015). Euthanasia and physician-assisted suicide in dementia: A qualitative study of the views of former dementia carers. Palliative Medicine, 29(8), 720–726.Google Scholar
van der Heide, A., Onwuteaka-Philipsen, B.D., Rurup, M.L., et al. (2007). End-of-life practices in the Netherlands under the Euthanasia Act. The New England Journal of Medicine, 356(19), 1957–1965. Available from http://www.nejm.org/doi/pdf/10.1056/NEJMsa071143.Google Scholar
van der Maaden, T., van der Steen, J.T., de Vet, H.C., et al. (2016). Prospective observations of discomfort, pain, and dyspnea in nursing home residents with dementia and pneumonia. Journal of the American Medical Directors Association, 17(2), 128–135. Epub ahead of print Sep 26, 2015.CrossRefGoogle ScholarPubMed
van der Steen, J.T., Pasman, H.R., Ribbe, M.W., et al. (2009). Discomfort in dementia patients dying from pneumonia and its relief by antibiotics. Scandinavian Journal of Infectious Diseases, 41(2), 143–151.Google Scholar
van der Steen, J.T., Onwuteaka-Philipsen, B.D., Knol, D.L., et al. (2013). Caregivers' understanding of dementia predicts patients' comfort at death: A prospective observational study. BMC Medicine, 11, 105. Epub ahead of print Dec 11.Google Scholar
van der Steen, J.T., Gijsberts, M.J., Hertogh, C.M., et al. , (2014 a). Predictors of spiritual care provision for patients with dementia at the end of life as perceived by physicians: A prospective study. BMC Palliative Care, 13(1), 61.Google Scholar
van der Steen, J.T., Radbruch, L., Hertogh, C.M., et al. (2014 b). 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(3), 197–209. Available from http://www.eapcnet.eu/Portals/0/Clinical/Dementia/DementiaWP_PM2014,28(3).pdf.CrossRefGoogle ScholarPubMed
van der Steen, J.T., Ribbe, M.W., Deliens, L., et al. (2014 c). Retrospective and prospective data collection compared in the Dutch End Of Life in Dementia (DEOLD) study. Alzheimer Disease and Associated Disorders, 28(1), 88–94.Google Scholar
van Soest-Poortvliet, M.C., van der Steen, J.T., Zimmerman, S., et al. (2013). Selecting the best instruments to measure quality of end-of-life care and quality of dying in long-term care. Journal of the American Medical Directors Association, 14(3), 179–186. Epub ahead of print Nov 17, 2012.CrossRefGoogle ScholarPubMed
van Soest-Poortvliet, M.C., van der Steen, J.T., Gutschow, G., et al. (2015). Advance care planning in nursing home patients with dementia: A qualitative interview study among family and professional caregivers. Journal of the American Medical Directors Association, 16(11), 979–989. Epub ahead of print Aug 5.Google Scholar
Volicer, L., Hurley, A.C. & Blasi, Z.V. (2001). Scales for evaluation of end-of-life care in dementia. Alzheimer Disease and Associated Disorders, 15(4), 194–200. Available from http://home.uchicago.edu/~tmurray1/research/articles/printed%20and%20read/scales%20for%20evaluation%20of%20end%20of%20life%20care%20in%20dementia.pdf.Google Scholar
Weuve, J., Hebert, L.E., Scherr, P.A., et al. (2014). Deaths in the United States among persons with Alzheimer's disease (2010–2050). Alzheimer's & Dementia, 10(2), e40–e46. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3976898/pdf/nihms556929.pdf.Google Scholar
World Health Organization (2002). WHO definition of palliative care. Available from http://www.who.int/cancer/palliative/definition/en/.Google Scholar