Skip to main content Accessibility help
×
Home
Hostname: page-component-768ffcd9cc-2bgxn Total loading time: 0.322 Render date: 2022-12-03T20:44:06.576Z Has data issue: true Feature Flags: { "useRatesEcommerce": false } hasContentIssue true

Palliative care during the final week of life of older people in nursing homes: A register-based study

Published online by Cambridge University Press:  04 January 2017

Jonas Smedbäck*
Affiliation:
Department of Health Care Sciences, Ersta Sköndal University College, Stockholm, Sweden
Joakim Öhlén
Affiliation:
Institute of Health and Care Sciences, The Sahlgrenska Academy and University of Gothenburg Center for Person-Centered Care, Gothenburg, Sweden Department of Health Care Sciences/Palliative Research Center, Ersta Sköndal University College, Stockholm, Sweden
Kristofer Årestedt
Affiliation:
Department of Health Care Sciences/Palliative Research Center, Ersta Sköndal University College, Stockholm, Sweden Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden
Anette Alvariza
Affiliation:
Department of Health Care Sciences/Palliative Research Center, Ersta Sköndal University College, Stockholm, Sweden Capio Palliative Care, Dalen Hospital, Stockholm, Sweden Department of Neurobiology, Care Science and Society, Karolinska Institutet, Huddinge, Sweden
Carl-Johan Fürst
Affiliation:
The Institute for Palliative Care, Faculty of Medicine, Department of Clinical Sciences, Oncology, Lund University, Lund, Sweden
Cecilia Håkanson
Affiliation:
Department of Health Care Sciences/Palliative Research Center, Ersta Sköndal University College, Stockholm, Sweden Department of Neurobiology, Care Science and Society, Karolinska Institutet, Huddinge, Sweden
*
Address correspondence and reprint requests to Jonas Smedbäck, Lövåsgården KVA Lindhem, Katrineholms Kommun, Vallavägen 18, SE-641 46 Katrineholm, Sweden. E-mail: jonas.smedback@gmail.com.

Abstract

Objective:

Our aim was to explore the presence of symptoms, symptom relief, and other key aspects of palliative care during the final week of life among older people residing in nursing homes.

Method:

Our study employed data from the Swedish Palliative Care Register on all registered individuals aged 60 and older who had died in nursing homes during the years 2011 and 2012. Variables pertaining to monitoring and treatment of symptoms, end-of-life discussions, circumstances around the death, and the individual characteristics of deceased individuals were explored using descriptive statistics.

Results:

The most common underlying causes of death among the 49,172 deceased nursing home residents were circulatory diseases (42.2%) and dementia (22.7%). The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%), and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1 and 4.3% of all individuals, respectively. The use of valid instruments for symptom assessment was reported for pain in 12.3% and for other symptoms in 7.8% of subjects. The most prevalent individual prescriptions for injection PRN (pro re nata, according to circumstances) were for pain treatment (79.5%) and rattles (72.8%). End-of-life discussions were performed with 27.3% of all the deceased individuals and with 53.9% of their relatives. Of all individuals, 82.1% had someone present at death, and 15.8% died alone. Of all the nursing home resident deaths recorded, 45.3% died in their preferred place.

Significance of results:

There were large variations in degree of relief from different symptoms during the final week of life. Pain was the most prevalent symptom, and it was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also less well-relieved. Our results indicate a need for improvement of palliative care in nursing home settings, focusing on management of distressing symptoms and promotion of end-of-life discussions.

Type
Original Articles
Copyright
Copyright © Cambridge University Press 2017 

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

REFERENCES

Andersson, S., Lindqvist, O., Fürst, C. J., et al. (2016). End-of-life care in residential care homes: A retrospective study of the perspectives of family members using the VOICES questionnaire. Scandinavian Journal of Caring Sciences. Epub ahead of print Mar 14.Google ScholarPubMed
Barclay, S., Froggatt, K., Crang, C., et al. (2014). Living in uncertain times: Trajectories to death in residential care homes. The British Journal of General Practice, 64(626), e576e583.CrossRefGoogle ScholarPubMed
Brandt, H.E., Deliens, L., Ooms, M.E., et al. (2005 a). Symptoms, signs, problems, and diseases of terminally ill nursing home patients: A nationwide observational study in the Netherlands. Archives of Internal Medicine, 165(3), 314320. Available from http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/486397.CrossRefGoogle ScholarPubMed
Brandt, H.E., Deliens, L., van der Steen, , et al. (2005 b). The last days of life of nursing home patients with and without dementia assessed with the Palliative Care Outcome Scale. Palliative Medicine, 19(4), 334342.CrossRefGoogle ScholarPubMed
Brazil, K., Brink, P., Kaasalainen, S., et al. (2012). Knowledge and perceived competence among nurses caring for the dying in long-term care homes. International Journal of Palliative Nursing, 18(2), 7783.CrossRefGoogle ScholarPubMed
British Geriatrics Society (2010). Palliative and end-of-life care for older people. London: British Geriatrics Society. Available from www.bgs.org.uk/index.php/topresources/publicationfind/goodpractice/368-palliativecare.Google ScholarPubMed
Burns, M. & McIlfatrick, S. (2015). Palliative care in dementia: Literature review of nurses' knowledge and attitudes towards pain assessment. International Journal of Palliative Nursing, 21(8), 400407.CrossRefGoogle ScholarPubMed
Clarke, A. & Seymour, J. (2010). “At the foot of a very long ladder”: Discussing the end of life with older people and informal caregivers. Journal of Pain and Symptom Management, 40(6), 857869. Available from http://www.jpsmjournal.com/article/S0885-3924(10)00524-5/pdf.CrossRefGoogle Scholar
Clegg, A., Young, J., Iliffe, S., et al. (2013). Frailty in elderly people. Lancet, 381(9868), 752762. Epub ahead of print Feb 8. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4098658/.CrossRefGoogle ScholarPubMed
Corazzini, K.N., Mueller, C., Anderson, R.A., et al. (2013). Pain medication management in nursing homes and nursing scope of practice. Journal of Gerontological Nursing, 39(4), 4046. Epub ahead of print Feb 28.CrossRefGoogle ScholarPubMed
Curtis, J.R., Wenrich, M.D., Carline, J.D., et al. (2001). Understanding physicians' skills at providing end-of-life care. Journal of General Internal Medicine, 16(1), 4149. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1495161/.Google ScholarPubMed
Dwyer, D. (2011). Experiences of registered nurses as managers and leaders in residential aged care facilities: A systematic review. International Journal of Evidence-Based Healthcare, 9(4), 388402.CrossRefGoogle ScholarPubMed
Dwyer, L.L. (2008). Dignity in the end of life care: What does it mean to older people and staff in nursing homes? Doctoral dissertation. Örebro, Sweden: Örebro University.Google Scholar
Ellershaw, J., Foster, A., Murphy, D., et al. (1997). Developing an integrated care pathway for the dying patient. European Journal of Palliative Care, 4, 203207.Google Scholar
Estabrooks, C.A., Hoben, M., Poss, J.W., et al. (2015). Dying in a nursing home: Treatable symptom burden and its link to modifiable features of work context. Journal of the American Medical Directors Association, 16(6), 515520. Epub ahead of print Mar 21. Available from http://www.jamda.com/article/S1525-8610(15)00152-8/pdf.CrossRefGoogle Scholar
Gomes, B. & Higginson, I.J. (2008). Where people die (1974–2030): Past trends, future projections and implications for care. Palliative Medicine, 22(1), 3341. Available from http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/Where-People-Die-Gomes.pdf.CrossRefGoogle Scholar
Håkanson, C., Öhlén, J., Morin, L., et al. (2015). A population-level study of place of death and associated factors in Sweden. Scandinavian Journal of Public Health, 43(7), 744751. Epub ahead of print Jul 20.CrossRefGoogle ScholarPubMed
Hall, S., Petkova, H., Tsouros, A.D., et al. (eds.) (2011). Palliative care for older people: Better practices. Geneva: World Health Organization. Available from http://www.euro.who.int/__data/assets/pdf_file/0017/143153/e95052.pdf.Google Scholar
Hallberg, I.R. (2004). Death and dying from old people's point of view: A literature review. Aging: Clinical and Experimental Research, 16(2), 87103.Google ScholarPubMed
Hallberg, I.R. (2006). Palliative care as a framework for older people's long-term care. International Journal of Palliative Nursing, 12(5), 224229.CrossRefGoogle ScholarPubMed
Handley, M., Goodman, C., Froggatt, K., et al. (2014). Living and dying: Responsibility for end-of-life care in care homes without on-site nursing provision. A prospective study. Health & Social Care in the Community, 22(1), 2229. Epub ahead of print May 29, 2013.CrossRefGoogle ScholarPubMed
Kaasalainen, S., Coker, E., Dolovich, L., et al. (2007). Pain management decision making among long-term care physicians and nurses. Western Journal of Nursing Research, 29(5), 561580. Epub ahead of print Jun 4. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5104556/pdf/nihms6237.pdf.CrossRefGoogle ScholarPubMed
Kehl, K. & Kowalkowski, J. (2012). A Systematic review of the prevalence of signs of impending death and symptoms in the final two weeks of life. The American Journal of Hospice & Palliative Care, 30(6), 601616. Epub ahead of print Dec 12.CrossRefGoogle ScholarPubMed
Lindskog, M., Tavelin, B. & Lundström, S. (2015). Old age as risk indicator for poor end-of-life care quality: A population-based study of cancer deaths from the Swedish Register of Palliative Care. European Journal of Cancer, 51(10), 13311339. Epub ahead of print May 6.CrossRefGoogle ScholarPubMed
Lo, R.S., Kwan, B.H., Lau, K.P., et al. (2010). The needs, current knowledge, and attitudes of care staff toward the implementation of palliative care in old age homes. The American Journal of Hospice & Palliative Care, 27(4), 266271. Epub ahead of print Dec 3, 2009.CrossRefGoogle ScholarPubMed
Lundqvist, G., Rasmussen, B.H. & Axelsson, B. (2011). Information of imminent death or not: Does it make a difference? Journal of Clinical Oncology, 29(29), 39273931. Epub ahead of print Sep 12. Available from http://ascopubs.org/doi/pdf/10.1200/JCO.2011.34.6247.CrossRefGoogle Scholar
Lundström, S., Axelsson, B., Heedman, P.A., et al. (2012). Developing a national quality register in end-of-life care: The Swedish experience. Palliative Medicine, 26(4), 313321. Epub ahead of print Jul 7, 2011.CrossRefGoogle ScholarPubMed
McGuire, D.B., Reifsnyder, J., Soeken, K., et al. (2011). Assessing pain in nonresponsive hospice patients: Development and preliminary testing of the Multidimensional Objective Pain Assessment Tool (MOPAT). Journal of Palliative Medicine, 14(3), 287292. Epub ahead of print Jan 25. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3114254/pdf/jpm.2010.0302.pdf.CrossRefGoogle Scholar
Miller, S.C., Lima, J.C., Looze, J., et al. (2012). Dying in U.S. nursing homes with advanced dementia: How does health care use differ for residents with, versus without, end-of-life Medicare skilled nursing facility care? Journal of Palliative Medicine, 15(1), 4350. Epub ahead of print Dec 16, 2011. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3264959/pdf/jpm.2011.0210.pdf.CrossRefGoogle ScholarPubMed
Mitchell, S.L., Kiely, D.K. & Hamel, M.B. (2004). Dying with advanced dementia in the nursing home. Archives of Internal Medicine, 164(3), 321326. Available from http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/216616.CrossRefGoogle ScholarPubMed
Morin, L., Johnell, K., van den Block, L. et al. (2016). Discussing end-of-life issues in nursing homes: A nationwide study in France. Age and Ageing, 45(3), 395405.CrossRefGoogle ScholarPubMed
Oliver, D.P., Porock, D. & Zweig, S. (2005). End-of-life care in U.S. nursing homes: A review of the evidence. Journal of the American Medical Directors Association, 6(Suppl. 3), S21S30.CrossRefGoogle Scholar
Österlind, J., Hansebo, G., Andersson, J., et al. (2011). A discourse of silence: Professional carers reasoning about death and dying in nursing homes. Ageing and Society, 31(4), 529544.CrossRefGoogle Scholar
Pleschberger, S., Seymour, J.E., Payne, S., et al. (2011). Interviews on end-of-life care with older people: Reflections on six European studies. Qualitative Health Research, 21(11), 15881600. Epub ahead of print Jul 6.CrossRefGoogle ScholarPubMed
Reyniers, T., Deliens, L., Pasman, H.R., et al. (2015). International variation in place of death of older people who died from dementia in 14 European and non-European countries. Journal of the American Medical Directors Association, 16(2), 165171. Epub ahead of print Dec 18, 2014.CrossRefGoogle ScholarPubMed
Seymour, J.E., Kumar, A. & Froggatt, K. (2011). Do nursing homes for older people have the support they need to provide end-of-life care? A mixed-methods enquiry in England. Palliative Medicine, 25(2), 125138. Epub ahead of print Jan 31. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3057627/pdf/10.1177_0269216310387964.pdf.CrossRefGoogle ScholarPubMed
Steers, J., Brereton, L. & Ingleton, C. (2007). Palliative care for all? A review of the evidence in community hospitals. International Journal of Palliative Nursing, 13(8), 392399.CrossRefGoogle ScholarPubMed
The Swedish National Board of Health and Welfare (2013). National guidelines for palliative care [in Swedish]. Available from http://www.socialstyrelsen.se/publikationer2006/2006-103-8/Sidor/default.aspx.Google ScholarPubMed
van der Steen, J.T., Radbruch, L., Hertogh, C.M., et al. (2013). 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), 197209. Epub ahead of print Jul 4. Available from http://pmj.sagepub.com/content/28/3/197.full.pdf+html.CrossRefGoogle ScholarPubMed
Wadensten, B., Condén, E., Wahlund, L., et al. (2007). How nursing home staff deal with residents who talk about death. International Journal of Older People Nursing, 2(4), 241249.CrossRefGoogle ScholarPubMed
Wetle, T., Shield, R., Teno, J., et al. (2005). Family perspectives on end-of-life care experiences in nursing homes. The Gerontologist, 45(4), 642650. Available from http://gerontologist.oxfordjournals.org/content/45/5/642.full.pdf+html.CrossRefGoogle ScholarPubMed
World Health Organization (2014). Strengthening of palliative care as a component of comprehensive care throughout the life course: Agenda item 15.5. Geneva: World Health Organization. Available from: http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf.Google Scholar
Wowchuk, S.M., McClement, S. & Bond, J. Jr (2007). The challenge of providing palliative care in the nursing home, part II: Internal factors. International Journal of Palliative Nursing, 13(7), 345350.CrossRefGoogle ScholarPubMed
46
Cited by

Save article to Kindle

To save this article to your Kindle, first ensure coreplatform@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Palliative care during the final week of life of older people in nursing homes: A register-based study
Available formats
×

Save article to Dropbox

To save this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you used this feature, you will be asked to authorise Cambridge Core to connect with your Dropbox account. Find out more about saving content to Dropbox.

Palliative care during the final week of life of older people in nursing homes: A register-based study
Available formats
×

Save article to Google Drive

To save this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you used this feature, you will be asked to authorise Cambridge Core to connect with your Google Drive account. Find out more about saving content to Google Drive.

Palliative care during the final week of life of older people in nursing homes: A register-based study
Available formats
×
×

Reply to: Submit a response

Please enter your response.

Your details

Please enter a valid email address.

Conflicting interests

Do you have any conflicting interests? *