Factors influencing place of death and disenrollment among patients receiving specialist palliative care

Main Article Content

Marco Di Nitto
Marco Artico
Michela Piredda
Maddalena De Maria
Caterina Magnani
Anna Marchetti
Chiara Mastroianni
Roberto Latina
Maria Grazia De Marinis
Daniela D'Angelo


Andersen’s behavioural model of health services use, place of death, patient discharge, palliative care, facilities and services utilization, logistic models, retrospective studies


Background and aim of the work: Place of death and disenrollment from specialized palliative care services (SPCSs) are two aspects that determine service utilization. These aspects should be determined by patient needs and preferences, but they are often associated to patient sociodemographic or contextual characteristics. The aim of this study was to describe which factors are associated with utilizing SPCSs in terms of place of death and disenrollment.

Methods: Retrospective cohort study. Patients (>18 years) who died or were disenrolled during SPCSs utilization. Two hierarchical regression models were performed, and variables were categorized in predisposing, enabling, and need factors according to the Andersen behavioral model of health services use.

Results: We included 35,869 patients (52,5% male, mean age 74,6 ± 12,3 SD), where 17,225 patients died in hospice and 16,953 at home, while 1,691 patients were disenrolled. Dying at home was associated with older age, oncological diagnosis, painful symptoms and longer survival time. Instead, service disenrollment was associated with less education, longer wait time and longer length of stay.

Conclusions: SPCS utilization was not influenced only by patient need, but also by other factors, such as social and contextual factors. These factors need to be considered by health care providers and efforts are needed for 1) identifying barriers and implementing effective interventions to support patients and caregivers in their preferred place of care and death and 2) for avoiding SPCS disenrollment with an increased probability of aggressive treatments and worse quality of life for patients.


Download data is not yet available.
Abstract 247 | PDF Downloads 203


1. Quill TE, Abernethy AP. Generalist plus specialist palliative care--creating a more sustainable model. N Engl J Med. 2013;368(13):1173-5.
2. Hui D, Bruera E. Models of integration of oncology and palliative care. Ann Palliat Med. 2015;4(3):89-98.
3. World Health Organization. Palliativecare for older people: better practices Copenhagen2011 [Available from: http://www.euro.who.int/__data/assets/pdf_file/0017/143153/e95052.pdf.
4. Gomes B, Calanzani N, Gysels M, Hall S, Higginson IJ. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care. 2013;12:7.
5. Abe K, Miyawaki A, Kobayashi Y, Watanabe T, Tamiya N. Place of death associated with types of long-term care services near the end-of-life for home-dwelling older people in Japan: a pooled cross-sectional study. BMC Palliat Care. 2020;19(1):121.
6. Webber C, Hsu AT, Tanuseputro P, Fitzgibbon E, Li C. Acute Care Utilization and Place of Death among Patients Discharged from an Inpatient Palliative Care Unit. J Palliat Med. 2020;23(1):54-9.
7. Cohen J, Houttekier D, Onwuteaka-Philipsen B, Miccinesi G, Addington-Hall J, Kaasa S, et al. Which patients with cancer die at home? A study of six European countries using death certificate data. J Clin Oncol. 2010;28(13):2267-73.
8. Higginson IJ, Sen-Gupta GJ. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med. 2000;3(3):287-300.
9. Cai J, Zhang L, Guerriere D, Fan H, Coyte PC. Where Do Cancer Patients in Receipt of Home-Based Palliative Care Prefer to Die and What Are the Determinants of a Preference for a Home Death? Int J Environ Res Public Health. 2020;18(1).
10. McCaughan D, Roman E, Smith AG, Garry AC, Johnson MJ, Patmore RD, et al. Perspectives of bereaved relatives of patients with haematological malignancies concerning preferred place of care and death: A qualitative study. Palliat Med. 2019;33(5):518-30.
11. Alawneh A, Anshasi H. Place of death for patients treated at a tertiary cancer center in Jordan. Support Care Cancer. 2020.
12. Sun Z, Guerriere DN, de Oliveira C, Coyte PC. Temporal trends in place of death for end-of-life patients: Evidence from Toronto, Canada. Health Soc Care Community. 2020;28(5):1807-16.
13. Tan WS, Bajpai R, Low CK, Ho AHY, Wu HY, Car J. Individual, clinical and system factors associated with the place of death: A linked national database study. PloS one. 2019;14(4):e0215566-e.
14. Stilwell P, Bhatt A, Mehta K, Carter B, Bisset M, Soanes L, et al. Preferred place of death in paediatric, teenage and young adult haemato-oncology patients: a retrospective review. BMJ Support Palliat Care. 2020.
15. Nilsson J, Axelsson B, Holgersson G, Carlsson T, Bergqvist M, Bergstrom S. Geographical Differences in Likelihood of Home Death Among Palliative Cancer Patients: A National Population-based Register Study. Anticancer Res. 2020;40(7):3897-903.
16. Yeh S-T, Ng Y-Y, Wu S-C. Hospital and Patient Characteristics Regarding the Place of Death of Hospitalized Impending Death Patients: A Multilevel Analysis. Int J Environ Res Public Health. 2019;16(23):4609.
17. Carlson M, Herrin J, Du Q, Epstein AJ, Cherlin E, Morrison RS, et al. Hospice characteristics and the disenrollment of patients with cancer. Health Serv Res. 2009;44(6):2004-21.
18. Aldridge MD, Canavan M, Cherlin E, Bradley EH. Has Hospice Use Changed? 2000-2010 Utilization Patterns. Med Care. 2015;53(1):95-101.
19. Casarett DJ, Marenberg ME, Karlawish JH. Predictors of withdrawal from hospice. J Palliat Med. 2001;4(4):491-7.
20. Johnson KS, Kuchibhatla M, Tanis D, Tulsky JA. Racial differences in hospice revocation to pursue aggressive care. AMA Arch Intern Med. 2008;168(2):218-24.
21. Wang SY, Dang W, Aldridge MD, Canavan M, Cherlin E, Bradley E. Associations of Hospice Disenrollment and Hospitalization With Continuous Home Care Provision. Med Care. 2017;55(9):848-55.
22. Carlson M, Herrin J, Du Q, Epstein AJ, Barry CL, Morrison RS, et al. Impact of hospice disenrollment on health care use and medicare expenditures for patients with cancer. J Clin Oncol. 2010;28(28):4371-5.
23. Andersen R, Davidson PL. Improving Access to Care in America: Individual and Contextual Indicators. Changing the US health care system: Key issues in health services policy and management, 3rd ed. San Francisco, CA, US: Jossey-Bass; 2007. p. 3-31.
24. von Elm E, Altman DG, Egger M, Pocock SJ, Gøtzsche PC, Vandenbroucke JP. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. J Clin Epidemiol. 2008;61(4):344-9.
25. D'Angelo D, Di Nitto M, Giannarelli D, Croci I, Latina R, Marchetti A, et al. Inequity in palliative care service full utilisation among patients with advanced cancer: a retrospective Cohort study. Acta Oncol (Stockholm, Sweden). 2020;59(6):620-7.
26. Andersen R. Revisiting the behavioral model and access to medical care: does it matter? J Health Soc Behav 1995;36(1):1-10.
27. Lee SH, Ryu JI, Jung SH. Differences in Utilization of Medical and Dental Services among Homeless People in South Korea. Int J Environ Res Public Health. 2020;17(15).
28. Serna CA, Sanchez J, Arevalo O, et al. Self-reported factors associated with dental care utilization among Hispanic migrant farmworkers in South Florida. J Public Health Dent. 2020;80(3):186-193.
29. Jönsson B, Holde GE, Baker SR. The role of psychosocial factors and treatment need in dental service use and oral health among adults in Norway. Community Dent Oral Epidemiol. 2020;48(3):215-24.
30. Li W, Dorstyn DS, Denson LA. Predictors of Mental Health Service Use by Young Adults: A Systematic Review. Psychiatr Serv (Washington, DC). 2016;67(9):946-56.
31. Phillipson L, Jones SC, Magee C. A review of the factors associated with the non-use of respite services by carers of people with dementia: implications for policy and practice. Health Soc Care Community. 2014;22(1):1-12.
32. Roberts T, Miguel Esponda G, Krupchanka D, Shidhaye R, Patel V, Rathod S. Factors associated with health service utilisation for common mental disorders: a systematic review. BMC Psychiatry. 2018;18(1):262.
33. Franck JE, Ringa V, Cœuret-Pellicer M, Chauvin P, Menvielle G. The determinants of cervical cancer screening uptake in women with obesity: application of the Andersen's behavioral model to the CONSTANCES survey. Cancer Causes Control. 2020;31(1):51-62.
34. Jin SW, Yun Lee H, Lee J. Analyzing factors enabling colorectal cancer screening adherence in Korean Americans using the Andersen's Behavioral Model of Health Services Utilization. J Psychosoc Oncol. 2019;37(6):729-45.
35. Lee HY, Lust K, Vang S, Desai J. Male Undergraduates' HPV Vaccination Behavior: Implications for Achieving HPV-Associated Cancer Equity. J Community Health. 2018;43(3):459-66.
36. Lindley LC. The Effect of Pediatric Palliative Care Policy on Hospice Utilization Among California Medicaid Beneficiaries. J Pain Symptom Manage. 2016;52(5):688-94.
37. Lindley LC, Newnam KM. Hospice Use for Infants With Life-Threatening Health Conditions, 2007 to 2010. J Pediatr Health Care. 2017;31(1):96-103.
38. Lindley LC, Shaw SL. Who are the children using hospice care? J Spec Pediatr Nurs. 2014;19(4):308-15.
39. Definizione degli standard relativi all'assistenza ai malati terminali in trattamento palliativo, in attuazione dell'articolo 1, comma 169, della legge 30 dicembre 2004, n. 311, (2007).
40. Ministry of health. . Rome: Italian Government; 2019.
41. Jordan RI, Allsop MJ, ElMokhallalati Y, Jackson CE, Edwards HL, Chapman EJ, et al. Duration of palliative care before death in international routine practice: a systematic review and meta-analysis. BMC Med. 2020;18(1):368.
42. Little RJA. A Test of Missing Completely at Random for Multivariate Data with Missing Values. J Am Stat Assoc. 1988;83(404):1198-202.
43. Blankers M, Koeter MW, Schippers GM. Missing data approaches in eHealth research: simulation study and a tutorial for nonmathematically inclined researchers. J Med Internet Res. 2010;12(5):e54.
44. Jarosek SL, Shippee TP, Virnig BA. Place of Death of Individuals with Terminal Cancer: New Insights from Medicare Hospice Place-of-Service Codes. J Am Geriatr Soc. 2016;64(9):1815-22.
45. Malhotra C, Bundoc FG, Sim D, Jaufeerally FR, Finkelstein EA. Instability in Preference for Place of Death Among Patients With Symptoms of Advanced Heart Failure. J Am Med Dir Assoc. 2021;22(2):349.e29-.e34.
46. Neergaard MA, Brunoe AH, Skorstengaard MH, Nielsen MK. What socio-economic factors determine place of death for people with life-limiting illness? A systematic review and appraisal of methodological rigour. Palliat Med. 2019;33(8):900-25.
47. Artico M, Piredda M, D'Angelo D, Di Nitto M, Giannarelli D, Marchetti A, et al. Palliative care organization and staffing models in residential hospices: Which makes the difference? Int J Nurs Stud. 2022;126:104135.
48. Gladstone JW, Dupuis SL, Wexler E. Changes in family involvement following a relative's move to a long-term care facility. Can J Aging. 2006;25(1):93-106.
49. Higginson IJ, Daveson BA, Morrison RS, Yi D, Meier D, Smith M, et al. Social and clinical determinants of preferences and their achievement at the end of life: prospective cohort study of older adults receiving palliative care in three countries. BMC Geriatr. 2017;17(1):271.
50. Malik FA, Gysels M, Higginson IJ. Living with breathlessness: a survey of caregivers of breathless patients with lung cancer or heart failure. Palliat Med. 2013;27(7):647-56.
51. Simon ST, Higginson IJ, Benalia H, Gysels M, Murtagh FE, Spicer J, et al. Episodes of breathlessness: types and patterns - a qualitative study exploring experiences of patients with advanced diseases. Palliat Med. 2013;27(6):524-32.
52. Costa V, Earle CC, Esplen MJ, Fowler R, Goldman R, Grossman D, et al. The determinants of home and nursing home death: a systematic review and meta-analysis. BMC Palliat Care. 2016;15:8.
53. Johnson L, Blew A, Schreier AM. Health Disparities in Hospice Utilization and Length of Stay in a Diverse Population With Lung Cancer. Am J Hosp Palliat Care. 2019;36(6):513-8.
54. Soroka JT, Froggatt K, Morris S. Family Caregivers' Confidence Caring for Relatives in Hospice Care at Home: An Exploratory Qualitative Study. Am J Hosp Palliat Care. 2018;35(12):1540-6.
55. D'Angelo D, Mastroianni C, Artico M, Biagioli V, Latina R, Guarda M, et al. Validity and reliability of the Palliative Care Transition Measure for Caregivers (PCTM-C). Palliat Support Care. 2018:1-6.
56. Shah S, Qaisar F, Azam I, Mansoor K. Perceptions, knowledge and attitudes towards the concept and approach of palliative care amongst caregivers: a cross-sectional survey in Karachi, Pakistan. BMC Palliat Care. 2020;19(1):180.
57. Benini F, Fabris M, Pace DS, Vernò V, Negro V, De Conno F, et al. Awareness, understanding and attitudes of Italians regarding palliative care. Ann Ist Super Sanita. 2011;47(3):253-9.
58. Westerlund C, Tishelman C, Benkel I, Fürst CJ, Molander U, Rasmussen BH, et al. Public awareness of palliative care in Sweden. Scand J Public Health. 2018;46(4):478-87.

Most read articles by the same author(s)