Understanding the environment in which patients live at the end of their lives is essential to improving palliative care for these patients and their families.
Objectives:
We aimed to explore the different living places and trajectories of palliative care patients in the last three months of life in primary care and to identify patient characteristics associated with these trajectories.
Methods:
This retrospective national study was carried out among a population of adult patients who died a non-sudden death. The trajectories were modeled and classified using sequence analysis, optimal matching, and hierarchical ascendant clustering. Univariate and multivariate multinomial logistic regression compared patient characteristics associated with these trajectories. The focus was on primary care. Patients had to have spent at least one day at home or in a nursing home in the last three months before their death. The research took place between November 2020 and November 2021 in mainland France.
Results:
Three hundred adult patients were included in the study. Cluster analysis revealed three main trajectories during the last three months of life: “staying at home” (57%), “staying in a nursing home” (29%), and “moving from home to hospital” (14%). Dementia and having children limited hospitalization. Not having an informal caregiver and having dementia were associated with staying in a nursing home.
Conclusions:
Palliative care patients’ living situations and transitions can be tracked using primary care practice data. This study highlights the unique needs of palliative care in home and nursing home settings. Additionally, factors such as dementia and family dynamics play a significant role in determining where patients live, which can help inform clinical practices and research strategies in palliative care.
Get full access to this article
View all access options for this article.
References
1.
RietjensJAC, SudoreRL, ConnollyM, et al.; European Association for Palliative Care. Definition and recommendations for advance care planning: An international consensus supported by the European Association for Palliative Care. Lancet Oncol, 2017; 18(9):e543–e551.
2.
DriessenA, BorgstromE, CohnS. Placing death and dying: Making place at the end of life. Soc Sci Med, 2021; 291:113974.
3.
HoareS, MorrisZS, KellyMP, et al.Do patients want to die at home? a systematic review of the UK literature, focused on missing preferences for place of death. PLoS One, 2015; 10(11):e0142723.
4.
HanariK, MoodySY, SugiyamaT, TamiyaN. Preferred place of end-of-life care based on clinical scenario: A cross-sectional study of a general Japanese population. Healthcare (Basel), 2023; 11(3):406.
5.
PintoS, LopesS, de SousaAB, et al.Patient and family preferences about place of end-of-life care and death: An umbrella review. J Pain Symptom Manage, 2024; 67(5):e439–e452.
6.
CohenJ, PivodicL, MiccinesiG, et al.International study of the place of death of people with cancer: A population-level comparison of 14 countries across 4 continents using death certificate data. Br J Cancer, 2015; 113(9):1397–1404.
7.
HigginsonIJ, AstinP, DolanS. Where do cancer patients die? Ten-year trends in the place of death of cancer patients in England. Palliat Med, 1998; 12(5):353–363.
8.
PivodicL, PardonK, MiccinesiG, et al.Hospitalisations at the end of life in four European countries: A population-based study via epidemiological surveillance networks. J Epidemiol Community Health, 2016; 70(5):430–436.
9.
PoulalhonC, Rotelli-BihetL, MoineS, et al.Use of hospital palliative care according to the place of death and disease one year before death in 2013: A French national observational study. BMC Palliat Care, 2018; 17(1):75.
10.
Oosterveld-VlugMG, HeinsMJ, BoddaertMSA, et al.Evaluating quality of care at the end of life and setting best practice performance standards: A population-based observational study using linked routinely collected administrative databases. BMC Palliat Care, 2022; 21(1):51.
11.
Van den BlockL, Onwuteaka-PhilipsenB, MeeussenK, et al.Nationwide continuous monitoring of end-of-life care via representative networks of general practitioners in Europe. BMC Fam Pract, 2013; 14:73.
12.
BarclayS, MoranE, BoaseS, et al.Primary palliative care research: Opportunities and challenges. BMJ Support Palliat Care, 2019; 9(4):468–472.
13.
Van den BlockL, KoW, MiccinesiG, et al.Final transitions to place of death: Patients and families wishes. J Public Health (Oxf), 2017; 39(4):e302–e311.
14.
Van den BlockL, DeschepperR, BossuytN, et al.Care for patients in the last months of life: The Belgian Sentinel network monitoring end-of-life care study. Arch Intern Med, 2008; 168(16):1747–1754.
15.
Van den BlockL, PivodicL, PardonK, et al.Transitions between health care settings in the final three months of life in four EU countries. Eur J Public Health, 2015; 25(4):569–575.
16.
WilliamsN, BoumansN, LuymesN, et al.What should be measured to assess the quality of community-based palliative care? Results from a collaborative expert workshop. Palliat Support Care, 2022; 20(2):226–232.
17.
GabadinhoA, RitschardG, MüllerNS, StuderM. Analyzing and visualizing state sequences in R with TraMineR. J Stat Soft, 2011; 40(4):1–37.
18.
MathewS, PeatG, ParryE, et al.Applying sequence analysis to uncover ‘real-world’ clinical pathways from routinely collected data: A systematic review. J Clin Epidemiol, 2024; 166:111226.
19.
QiuW, JoeH. Generation of random clusters with specified degree of separation. Journal of Classification, 2006; 23(2):315–334.
20.
DolnicarS. A Review of Unquestioned Standards in Using Cluster Analysis for Data-Driven Market Segmentation. Faculty of Commerce – Papers. 2002 Jan 1.
21.
DolnicarS, GrünB, LeischF, SchmidtK. Required sample sizes for data-driven market segmentation analyses in tourism. J Travel Res, 2014; 53(3):296–306.
22.
DalmaijerES, NordCL, AstleDE. Statistical power for cluster analysis. BMC Bioinformatics, 2022; 23(1):205.
23.
AbarshiE, EchteldM, Van den BlockL, et al.Transitions between care settings at the end of life in the Netherlands: Results from a nationwide study. Palliat Med, 2010; 24(2):166–174.
24.
de NooijerK, PivodicL, DeliensL, et al.Primary palliative care for older people in three European countries: A mortality follow-back quality study. BMJ Support Palliat Care, 2020; 10(4):462–468.
25.
PennecS, MonnierA, PontoneS, AubryR. End-of-life medical decisions in France: A death certificate follow-up survey 5 years after the 2005 act of parliament on patients’ rights and end of life. BMC Palliat Care, 2012; 11(1):25.
26.
CostaV, EarleCC, EsplenMJ, et al.The determinants of home and nursing home death: A systematic review and meta-analysis. BMC Palliat Care, 2016; 15:8.
27.
GomesB, CalanzaniN, GyselsM, et al.Heterogeneity and changes in preferences for dying at home: A systematic review. BMC Palliat Care, 2013; 12:7.
28.
GamblinV, Prod’hommeC, LecoeuvreA, et al.Home hospitalization for palliative cancer care: Factors associated with unplanned hospital admissions and death in hospital. BMC Palliat Care, 2021; 20(1):24.
29.
MoonF, KissaneDW, McDermottF. Discordance between the perceptions of clinicians and families about end-of-life trajectories in hospitalized dementia patients. Palliat Support Care, 2021; 19(3):304–311.
30.
BjørnelvG, HagenTP, FormaL, AasE. Care pathways at end-of-life for cancer decedents: Registry based analyses of the living situation, healthcare utilization and costs for all cancer decedents in Norway in 2009-2013 during their last 6 months of life. BMC Health Serv Res, 2022; 22(1):1221.
31.
Mulcahy SymmonsS, RyanK, AounSM, et al.Decision-making in palliative care: Patient and family caregiver concordance and discordance-systematic review and narrative synthesis. BMJ Support Palliat Care, 2023; 13(4):374–385.
32.
KjellstadliC, HanL, AlloreH, et al.Associations between home deaths and end-of-life nursing care trajectories for community-dwelling people: A population-based registry study. BMC Health Serv Res, 2019; 19(1):698.
33.
CrowtherJ, HortonS, WilsonK, Lloyd-WilliamsM. A UK qualitative study of living and dying with dementia in the last year of life. Palliat Care Soc Pract, 2022; 16:26323524221096691.
34.
ChenP-J, SmitsL, MirandaR, et al.Impact of home healthcare on end-of-life outcomes for people with dementia: A systematic review. BMC Geriatr, 2022; 22(1):80.
35.
BoydM, FreyR, BalmerD, et al.End of life care for long-term care residents with dementia, chronic illness and cancer: Prospective staff survey. BMC Geriatr, 2019; 19(1):137.
36.
ShepherdH, LivingstonG, ChanJ, SommerladA. Hospitalisation rates and predictors in people with dementia: A systematic review and meta-analysis. BMC Med, 2019; 17(1):130.
37.
Van Den NoortgateNJ, Van den BlockL. End-of-life care for older people: The way forward. Age Ageing, 2022; 51(7):afac078.
38.
PennecS, GaymuJ, MorandE, et al.Trajectories of care home residents during the last month of life: The case of France. Ageing & Society, 2017; 37(2):325–351.
39.
StielS, KrauseO, BerndtCS, et al.Caring for frail older patients in the last phase of life: Challenges for general practitioners in the integration of geriatric and palliative care. Z Gerontol Geriatr, 2020; 53(8):763–769.
40.
Aldea-RamosN, Le StratY, FouilletA. Place of death in France: Impact of the first wave (March–May 2020) of the Covid-19 epidemic. BMC Public Health, 2023; 23(1):776.
