Exploring a New Model of End-of-Life Care for Older People That Operates in the Space Between the Life World and the Healthcare System: A Qualitative Case Study

Document Type : Original Article

Authors

International Observatory on End of Life Care, Division of Health Research, Lancaster University, Lancaster, UK

Abstract

Background
Innovative service models to facilitate end-of-life care for older people may be required to enable and bolster networks of care. The aim of this study was to understand how and why a new charitably funded service model of end-of-life care impacts upon the lives of older people.

 
Methods
A multiple exploratory qualitative case study research strategy. Cases were 3 sites providing a new end-oflife service model for older people. The services were provided in community settings, primarily providing support in peoples own homes. Study participants included the older people receiving the end-of-life care service, their informal carers, staff providing care within the service and other stakeholders. Data collection included individual interviews with older people and informal carers at 2 time points, focus group interviews with staff and local stakeholders, nonparticipant observation of meetings, and a final cross-case deliberative panel discussion workshop. Framework analysis facilitated analysis within and across cases.

 
Results
Twenty-three service users and 5 informal carers participated in individual interviews across the cases. Two focus groups were held with an additional 12 participants, and 19 people attended the deliberative panel workshop. Important elements contributing to the experience and impacts of the service included organisation, where services felt they were ‘outsiders,’ the focus of the services and their flexible approach; and the impacts particularly in enriching relationships and improving mental health.

 
Conclusion
These end-of-life care service models operated in a space between the healthcare system and the person’s life world. This meant there could be ambiguity around their services, where they occupied a liminal, but important, space. These services are potentially important to older people, but should not be overly constrained or they may lose the very flexibility that enables them to have impact.

Highlights

 

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Keywords

References

  1. Bylander J. Community-focused health care for the seriously Ill. Health Affairs. 2019;38(3):344-346. doi:10.1377/hlthaff.2019.00111
  2. Meier DE, Back AL, Berman A, Block SD, Corrigan JM, Morrison RS. A National Strategy For Palliative Care. Health Aff (Millwood). 2017;36(7):1265-1273. doi:10.1377/hlthaff.2017.0164
  3. Penders YW, Gilissen J, Moreels S, Deliens L, Block LVd. Palliative care service use by older people: Time trends from a mortality follow-back study between 2005 and 2014. Palliat  Med. 2018;32(2):466-475.  doi:10.1177/0269216317720833
  4. Walshe C, Todd C, Caress A, Chew-Graham C. Patterns of access to community palliative care services: a literature review. J Pain Symptom Manage. 2009;37(5):884-912.
  5. Aldridge M, Bradley EH. Epidemiology and patterns of care at the end of life: rising complexity, shifts in care patterns and sites of death. Health Aff (Millwood). 2017;36(7):1175-1183. doi:10.1377/hlthaff.2017.0182
  6. General Medical Council. Treatment and care towards the end of life: good practice in decision making. London: General Medical Council; 2010.
  7. Abel J, Walter T, Carey LB, et al. Circles of care: should community development redefine the practice of palliative care? BMJ Support Palliat Care. 2013;3(4):383-388. doi:10.1136/bmjspcare-2012-000359
  8. Sallnow L, Richardson H, Murray SA, Kellehear A. The impact of a new public health approach to end-of-life care: a systematic review. Palliat Med. 2016;30(3):200-211. doi:10.1177/0269216315599869
  9. Lewis J, DiGiacomo M, Currow D, Davidson P. Social capital in a lower socioeconomic palliative care population: a qualitative investigation of individual, community and civic networks and relations. BMC Palliative Care. 2014;13(1):30.
  10. Lewis JM, DiGiacomo M, Currow D, Davidson P. A social capital framework for palliative care: supporting health and well-being for people with life-limiting illness and their carers through social relations and networks. J Pain Symptom Manag. 2013;45(1):92-103.
  11. Ornstein KAK, A.S; Bollens-Lund, E; Wolff, J.L;. A national profile of end-of-life caregiving in the United States. Health Affairs. 2017;36(7):1184-1192. doi:10.1377/hlthaff.2017.0134
  12. Holt-Lunstad J, Smith TB, Layton JB. Social Relationships and Mortality Risk: A Meta-analytic Review. PLoS Med. 2010;7(7):e1000316. doi:10.1371/journal.pmed.1000316
  13. Di Pollina L, Guessous I, Petoud V, et al. Integrated care at home reduces unnecessary hospitalizations of community-dwelling frail older adults: a prospective controlled trial. BMC Geriatr. 2017;17(1):53. doi:10.1186/s12877-017-0449-9
  14. Eklund K, Wilhelmson K. Outcomes of coordinated and integrated interventions targeting frail elderly people: a systematic review of randomised controlled trials. Health Soc Care Community. 2009;17(5):447-458. doi:10.1111/j.1365-2524.2009.00844.x
  15. Randall S, Daly G, Thunhurst C, Mills N, Guest DA, Barker A. Case management of individuals with long-term conditions by community matrons: report of qualitative findings of a mixed method evaluation. Prim Health Care Res Dev. 2014;15(1):26-37. doi:10.1017/s1463423612000667
  16. Yu DS. Effects of a health and social collaborative case management model on health outcomes of family caregivers of frail older adults: preliminary data from a pilot randomized controlled trial. J Am Geriatr Soc. 2016;64(10):2144-2148. doi:10.1111/jgs.14259
  17. Oeseburg B, Wynia K, Middel B, Reijneveld SA. Effects of case management for frail older people or those with chronic illness: a systematic review. Nurs Res. 2009;58(3):201-210. doi:10.1097/NNR.0b013e3181a30941
  18. Hallberg IR, Kristensson J. Preventive home care of frail older people: a review of recent case management studies. J Clin Nurs. 2004;13(6b):112-120.
  19. You EC, Dunt D, Doyle C, Hsueh A. Effects of case management in community aged care on client and carer outcomes: a systematic review of randomized trials and comparative observational studies. BMC Health Serv Res. 2012;12:395. doi:10.1186/1472-6963-12-395
  20. Yin RK. Case Study Research. Design and Method. 3rd ed. Thousand Oaks: Sage; 2003.
  21. Walshe C. The evaluation of complex interventions in palliative care: An exploration of the potential of case study research strategies. Palliat Med. 2011;25(8):774-781.
  22. Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In: Bryman A, Burgess RG, eds. Analysing Qualitative Data. London: Routeledge; 1994.
  23. Walshe CE, Caress AL, Chew-Graham C, Todd CJ. Case studies: a research strategy appropriate for palliative care? Palliat Med. 2004;18:677-684. doi:10.1191/0269216304pm962ra
  24. Habermas J. The Theory of Communicative Action, Volume One: Reason and the Rationalization of Society (Cambridge: Polity). Beacon Press;1984.
  25. Habermas J. The theory of communicative action, Volume 2: Lifeworld and System: A Critique Of Functionalist Reason. Beacon Press; 1985.
  26. Maguire K, Britten N. 'You're there because you are unprofessional': patient and public involvement as liminal knowledge spaces. Sociol Health Illn. 2018;40(3):463-477. doi:10.1111/1467-9566.12655
  27. West E, Onwuteaka-Philipsen B, Philipsen H, Higginson IJ, Pasman HRW. "Keep All Thee 'Til the End": Reclaiming the Lifeworld for Patients in the Hospice Setting. Omega (Westport). 2017:30222817697040. doi:10.1177/0030222817697040
  28. Pearce C, Phillips C, Hall S, et al. Contributions from the lifeworld: quality, caring and the general practice nurse. Qual Prim Care. 2009;17(1):5-13.
  29. MacArtney JI, Broom A, Kirby E, Good P, Wootton J. The liminal and the parallax: living and dying at the end of life. Qual Health Res. 2017;27(5):623-633. doi:10.1177/1049732315618938
  30. Blows E, Bird L, Seymour J, Cox K. Liminality as a framework for understanding the experience of cancer survivorship: a literature review. J Adv Nurs. 2012;68(10):2155-2164. doi:10.1111/j.1365-2648.2012.05995.x
  31. Vanderstichelen S, Cohen J, Van Wesemael Y, Deliens L, Chambaere K. The liminal space palliative care volunteers occupy and their roles within it: a qualitative study. BMJ Support Palliat Care. 2018. doi:10.1136/bmjspcare-2018-001632
  32. Henson LA, Higginson IJ, Daveson BA, et al. 'I'll be in a safe place': a qualitative study of the decisions taken by people with advanced cancer to seek emergency department care. BMJ Open. 2016;6(11):e012134. doi:10.1136/bmjopen-2016-012134
  33. Robinson J, Gott M, Frey R, Gardiner C, Ingleton C. Predictors of patient-related benefit, burden and feeling safe in relation to hospital admissions in palliative care: a cross-sectional survey. Palliat Med. 2018;32(1):167-171. doi:10.1177/0269216317731991
  34. Leine M, Wahl AK, Borge CR, Hustavenes M, Bondevik H. Feeling safe and motivated to achieve better health: Experiences with a partnership-based nursing practice programme for in-home patients with chronic obstructive pulmonary disease. J Clin Nurs. 2017;26(17-18):2755-2764. doi:10.1111/jocn.13794
  35. Cain CL, Wallace SP, Ponce NA. Helpfulness, Trust, and Safety of Neighborhoods: Social Capital, Household Income, and Self-Reported Health of Older Adults. Gerontologist. 2018;58(1):4-14. doi:10.1093/geront/gnx145
  36. Cramm JM, Nieboer AP. Relationships between frailty, neighborhood security, social cohesion and sense of belonging among community-dwelling older people. Geriatr Gerontol Int. 2013;13(3):759-763. doi:10.1111/j.1447-0594.2012.00967.x
  37. Holt-Lunstad J, Smith TB, Baker M, Harris T, Stephenson D. Loneliness and social isolation as risk factors for mortality: a meta-analytic review. Perspect Psychol Sci. 2015;10(2):227-237. doi:10.1177/1745691614568352
  38. Walshe C, Chew-Graham C, Todd C, Caress A. What influences referrals within community palliative care services? A qualitative case study. Soc Sci Med. 2008;67(1):137-146.
  39. Gunaratnam Y. Ethnicity, Older People and Palliative Care. London: National Council for Palliative Care; 2006.
International Journal of Health Policy and Management
Volume 9, Issue 8
August 2020
Pages 344-351

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History

  • Receive Date: 26 July 2019
  • Revise Date: 11 December 2019
  • Accept Date: 11 December 2019
  • First Publish Date: 01 August 2020

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