Palliative Care in Residential Settings
Many residential care settings for older people have been established on a culture of rehabilitation. However, this is changing. In many Western countries, recent policy is encouraging frail older people to stay longer in their own homes before going into 24-h care. As a result, on admission to these settings, older people are often considerably more dependent and frail than 10 years ago.
The palliative care needs of frail older people with multiple comorbidities admitted to residential care settings are significant. Palliative care is core to their work; such settings are now being compared to the former hospices that founded the hospice movement some 50 years ago. Hospices have an important role to play in reaching out to staff in residential care settings and the frail older people they care for in order to support and enhance a palliative care approach.
This chapter describes some of the differences between palliative care for people with advanced cancer (often dying in mid-life) and those dying as a frail older person at the end of their lives with multiple comorbidities. It highlights a number of different quality improvement initiatives through which staff in residential care settings can be supported to adopt a greater palliative care approach.
Currently, nearly a quarter of the population in the UK, in Canada, and the USA die in care homes. In other countries, such as The Netherlands and Norway where there is greater on-site healthcare provision including physicians, it is nearer 50% of the country’s population.
- Alzheimer’s Society. Low expectations. Attitudes on choice, care and community for people with dementia in care homes. 2013. Available at https://www.alzheimers.org.uk/download/downloads/id/1705_alzheimers_society_low_expectations_executive_summary.pdf. Accessed 7 July 2017.
- Baar F. Palliative care for the terminally ill in the Netherlands: the unique role of the nursing homes. Eur J Palliat Care. 1999;6(5):169–72.Google Scholar
- Baar F, van der Kloot Meijburg H. The role of the physician in nursing home care in The Netherlands. In: Hockley J, Clark D, editors. Palliative care for older people in care homes. Buckingham: Open University Press; 2002. p. 104–19.Google Scholar
- Froggatt K, Payne S, Morbey H, Edwards M, Finne-Soveri H, Gambassi G, Pasman RH, Szczerbińska K, Van Den Block L, on behalf of PACE. Palliative care development in European care homes and nursing homes: application of a typology of implementation. JAMDA. 2017a. https://doi.org/10.1016/j.jamda.2017.02.016. Published online: April 13, 2017. Accessed 13 June 2017.CrossRefGoogle Scholar
- Froggatt K, Arrue B, Edwards M, Finne-Soveri H, Morbey H, Payne S, Szczerbinska K, van den Noortgate, N, van den Block L. Palliative care systems and current practices in long term care facilities in Europe. 2017b. Available from http://www.eapcnet.eu/Portals/0/Policy/EU%20sup_proj_/PACE/EAPC_PACE_WP1_Deliverable_January_26_2017_final_amended%20typos.pdf. Accessed 5 May 2017.
- Hockley J. Organizational structures for enhancing standards of palliative care. In: Hockley J, Clark D, editors. Palliative Care for Older People in Care Homes. p165–181. Open University Press: Buckingham; 2002.Google Scholar
- Holman D, Sawkins N, Hockley J. Experience of use of advance care planning in care homes. In: Thomas K, Lobo B, editors. Advance care planning in end of life care. Oxford: Oxford University Press; 2011.Google Scholar
- Husebo BS, Wilco P, Achterberg WP, Lobbezoo F, Kunz M, Lautenbacher S, Kappesser J, Tudose C, Strand LI. Pain in patients with dementia: a review of pain assessment and treatment challenges. Nor Epidemiol. 2012;22(2):243–51.Google Scholar
- IAHPC. Definition of palliative care. International Association of Hospice and Palliative Care Manual on Palliative Care; 2017. https://hospicecare.com/resources/publications/getting-started/5-what-is-palliative-care. Accessed 17 June 2017, Houston, Texas: USA.
- Jagger C, Collerton JC, Davies K, Kingston A, Robinson L, Eccles MP, von Zglinicki T, Martin-Ruiz C, James OF, Kirkwood TB, Bond J. Capability and dependency in the Newcastle 85+ cohort study: projections of future care needs. BMC Geriatr. 2011;11:21. https://bmcgeriatr.biomedcentral.com/articles/10.1186/1471-2318-11-21. Last Accessed 17 June 2017.CrossRefGoogle Scholar
- Jones R. Choosing wisely for frail residents of long-term care homes: six recommendations. BCMJ. 2017;59(6): 300–1. http://www.bcmj.org/council-health-promotion/choosing-wisely-frail-residents-long-term-care-homes-six-recommendations
- Kinley J, Stone L, Dewey M, Levy J, Stewart R, McCrone P, Sykes N, Hansford P, Begum A, Hockley J. The effect of using high facilitation when implementing the Gold Standards Framework in Care Homes programme: a cluster randomised controlled trial. Palliat Med. 2014b;28(9):1099–109.CrossRefGoogle Scholar
- Kitson A, Rycroft-Malone J, Harvey G, McCormack B, Seers K, Titchen A. Evaluating the successful implementation of evidence into practice using the PARiHS framework: theoretical and practical challenges. Implement Sci. 2008;3:1. https://implementationscience.biomedcentral.com/articles/10.1186/1748-5908-3-1. Last Accessed 1 July 2017.CrossRefGoogle Scholar
- Lefebvre-Chapiro S, the Doloplus Group. The Doloplus-2 scale – evaluating pain in the elderly. Eur J Palliat Care. 2001;8:191–4.Google Scholar
- Lichtner V, Dowding D, Esterhuizen P, Closs J, Long AF, Corbett A, Briggs M. Pain assessment for people with dementia: a systematic review of systematic reviews of pain assessment tools. BMC Geriatr. 2014;14:138. https://bmcgeriatr.biomedcentral.com/articles/10.1186/1471-2318-14-138. Last Accessed 17 June 2017.CrossRefGoogle Scholar
- Mount B. First international conference on palliative care of the elderly. In: Hockley J, Clark D, editors. Palliative care for older people in care homes. Buckingham: Open University Press; 1989. p. 166. 2002.Google Scholar
- ONS. National population projections: 2014-based statistical bulletin. London: UK: Office of National Statistics; 2014. https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationprojections/bulletins/nationalpopulationprojections/2015-10-29
- Parker D. National rollout of the palliative approach toolkit for residential aged care facilities supporting residential aged care facility management and staff to deliver high quality palliative care for residents. 2013. Available from https://www.caresearch.com.au/Caresearch/portals/0/documents/whatispalliativecare/pa-toolkit/1-pa_toolkit_brochure-dl_websafe.pdf. Accessed 11 June 2017.
- Simard J. The end-of-life Namaste care program for people with dementia. 2nd ed. Baltimore: Health Professions Press; 2013.Google Scholar
- Smets T, Onwuteaka-Philipsen B, Miranda R, Pivodic L, Tanghe M et al. Integrating palliative care in long-term care facilities across Europe (PAC): protocol of a cluster randomized controlled trial of the ‘PACE Steps to Success’ intervention in seven countries. BMC Palliative Care. 2018;17(47). Open Access https://doi.org/10.1186/s12904-018-0297-1.
- Stacpoole M, Thompsell A, Hockley J. Toolkit for implementing the Namaste care programme for people with advanced dementia living in care homes. 2016. Available from http://www.stchristophers.org.uk/wp-content/uploads/2016/03/Namaste-Care-Programme-Toolkit-06.04.2016.pdf. Accessed 13 June 2017.
- Thomas K. Caring for the dying at home: companions on the journey. Oxford: Radcliffe Publishing; 2003.Google Scholar
- Thomas K. The GSF prognostic indicator. The Gold Standards Framework Centre in End of Life Care CIC. UK: The Royal College of General Practitioners; 2011. http://www.goldstandardsframework.org.uk/cd-content/uploads/files/General%20Files/Prognostic%20Indicator%20Guidance%20October%202011.pdf. Accessed 24 June 2017.
- Thomas K. Summary of evidence: Gold Standards Framework in Care Homes (GSFCH) training programme. 2016. Available from http://www.goldstandardsframework.org.uk/cd-content/uploads/files/GSF%20Care%20Home%20Evidence%20Summary%20Updated%20Oct%202016%20MSR%281%29.pdf. Accessed 11 June 2017.
- Torvik K, Kaasa S, Kirkevold O, Saltvedt I, Holen J, Fayers P, Rustoen T. Validation of Doloplus-2 among nonverbal nursing home patients – an evaluation of Doloplus-2 in a clinical setting. BMC Geriatr. 2010;10(9). https://doi.org/10.1186/1471-2318-10-9. Accessed 17 June 2017.
- UNFPA. Ageing in the twenty-first century: a celebration and a challenge. New York: United Nations Population Fund; 2012. http://www.unfpa.org/sites/default/files/pub-pdf/Ageing%20report.pdf. Accessed 17 June 2017.
- van den Block L, Smets T, van Dop N, Adang E, Andreasen P, Collingridge Moore D, Engels Y, Finne-Soveri H. Comparing palliative care in care homes across Europe (PACE): protocol of a cross-sectional study of deceased residents in 6 EU countries. JAMA. 2016;17(6):566. https://doi.org/10.1016/j.jamda.2016.03.008. Accessed 7 July 2017.CrossRefGoogle Scholar
- Van der Steen J, Radbruch L, Hertogh C, de Boer ME, Hughes J, Larkin P, Franke AL, Junger S, Gove D, Firth P, Koopmans R, Volicer L, on behalf of the EAPC. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2014;28(3):197–209.CrossRefGoogle Scholar
- Worcester A. The care of the aged, the dying and the dead. 2nd ed. Springfield: Charles C Thomas; 1935.Google Scholar