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Patterns of care at end of life for people with primary intracranial tumors: lessons learned

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Abstract

To determine the variability in processes of care in the last 6 months of life experienced by patients dying of primary intracranial tumors and potential predictors of place of death, a death-backwards cohort was assembled using historical data and 1,623 decedents were identified. 90 % of people had ≥1 admission to an acute care hospital and 23 % spent ≥3 months of their last 6 months of life in acute care. 44 % had ≥1 ER visits and 30 % were admitted ≥1 times to ICU. Only 18 % had a home visit by a physician. 10 % died at home but 49 % died in hospital, while 40 % died in a palliative care facility. Age, comorbidities, and being diagnosed with grade 4 astrocytoma were associated with greater burden of care. Level of care burden and age were associated with higher odds of dying in a treatment intensive place of death, being diagnosed with grade 4 astrocytoma had opposite effect. Despite valuable research efforts to improve the treatment of primary intracranial tumors that focus on biology, refinements to surgery, radiation, and chemotherapy, there is also room to improve aspects of care at the end of life situation. An integrative approach for this patients’ population, from diagnosis to death, could potentially reduce the care burden in the final period on the health care system, patient’s family and improve access to a better place of death.

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Notes

  1. Maintenance et Exploitation des Données pour l'Étude de la Clientèle Hospitalière.

  2. Régie de l'Assurance Maladie du Québec.

  3. Centre Local De Santé Communautaire

References

  1. Batchelor TT, Byrne TN (2006) Supportive care of brain tumor patients. Hematol Oncol Clin North Am 20(6):1337–1361

    Article  PubMed  Google Scholar 

  2. Patrick DL, Curtis JR, Engelberg RA, Nielsen E, McCown E (2003) Measuring and improving the quality of dying and death. Ann Intern Med 139:410–415

    Article  PubMed  Google Scholar 

  3. Gagnon B, Mayo NE, Hanley J, MacDonald N (2004) Pattern of care at the end of life: does age make a difference in what happens to women with breast cancer? J Clin Oncol 22:3458–3465

    Article  PubMed  Google Scholar 

  4. Earle CC, Ayanian JZ (2006) Looking back from death: the value of retrospective studies of end-of-life care. J Clin Oncol 24:838–840

    Article  PubMed  Google Scholar 

  5. Earle CC, Park ER, Lai B, Weeks JC, Ayanian JZ, Block S (2003) Identifying potential indicators of the quality of end-of-life cancer care from administrative data. J Clin Oncol 21:1133–1138

    Article  PubMed  Google Scholar 

  6. Tamblyn R, Reid T, Mayo N, McLeod P, Churchill-Smith M (2000) Using medical services claims to assess injuries in the elderly: sensitivity of diagnostic and procedure codes for injury ascertainment. J Clin Epidemiol 53:183–194

    Article  CAS  PubMed  Google Scholar 

  7. Gagnon B, Mayo NE, Laurin C, Hanley JA, McDonald N (2006) Identification in administrative databases of women dying of breast cancer. J Clin Oncol 24:856–862

    Article  PubMed  Google Scholar 

  8. Teno JM, Weitzen S, Fennell ML, Mor V (2001) Dying trajectory in the last year of life: does cancer trajectory fit other diseases? J Palliat Med 4:457–464

    Article  CAS  PubMed  Google Scholar 

  9. Eton DT, de Oliveira DR, Egginton JS, Ridgeway JL, Odell L, May CR, Montori VM (2012) Building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Relat Outcome Measures 3:39

    Article  Google Scholar 

  10. Pampalon R, Hamel D, Gamache P, Raymond G (2009) A deprivation index for health planning in Canada. Chronic Dis Can 29:178–191

    CAS  PubMed  Google Scholar 

  11. Scott SC, Goldberg MS, Mayo NE (1997) Statistical assessment of ordinal outcomes in comparative studies. J Clin Epidemiol 50:45–55

    Article  CAS  PubMed  Google Scholar 

  12. Tang ST, McCorkle R (2001) Determinants of place of death for terminal cancer patients. Cancer Invest 19:165–180

    Article  CAS  PubMed  Google Scholar 

  13. Sizoo EM, Braam L, Postma TJ, Pasman HR, Heimans JJ, Klein M, Reijneveld JC, Taphoorn MJ (2010) Symptoms and problems in the end-of-life phase of high-grade glioma patients. Neuro Oncol 12:1162–1166. doi:10.1093/neuonc/nop045

    Article  PubMed Central  PubMed  Google Scholar 

  14. Flechl B, Ackerl M, Sax C, Oberndorfer S, Calabek B, Sizoo E, Reijneveld J, Crevenna R, Keilani M, Gaiger A, Dieckmann K, Preusser M, Taphoorn MJ, Marosi C (2013) The caregivers’ perspective on the end-of-life phase of glioblastoma patients. J Neurooncol 112:403–411. doi:10.1007/s11060-013-1069-7

    Article  PubMed  Google Scholar 

  15. Simon ST, Gomes B, Koeskeroglu P, Higginson IJ, Bausewein C (2012) Population, mortality and place of death in Germany (1950–2050)—implications for end-of-life care in the future. Public health 126:937–946. doi:10.1016/j.puhe.2012.06.014

    Article  CAS  PubMed  Google Scholar 

  16. Fukui S, Kawagoe H, Masako S, Noriko N, Hiroko N, Toshie M (2003) Determinants of the place of death among terminally ill cancer patients under home hospice care in Japan. Palliat Med 17:445–453

    Article  PubMed  Google Scholar 

  17. Murray MA, Fiset V, Young S, Kryworuchko J (2009) Where the dying live: a systematic review of determinants of place of end-of-life cancer care. Onc Nurs Soc 36(1):69–77

    Google Scholar 

  18. Thorne CP, Seamark DA, Lawrence C, Gray DJ (1994) The influence of general practitioner community hospitals on the place of death of cancer patients. Palliat Med 8:122–128

    Article  CAS  PubMed  Google Scholar 

  19. De Conno F, Caraceni A, Groff L, Brunelli C, Donati I, Tamburini M, Ventafridda V (1996) Effect of home care on the place of death of advanced cancer patients. Eur J Cancer 32A:1142–1147

    Article  PubMed  Google Scholar 

  20. Pritchard RS, Fisher ES, Teno JM, Sharp SM, Reding DJ, Knaus WA, Wennberg JE, Lynn J (1998) Influence of patient preferences and local health system characteristics on the place of death. Support investigators. Study to understand prognoses and preferences for risks and outcomes of treatment. J Am Geriatr Soc 46:1242

    CAS  PubMed  Google Scholar 

  21. Agences statistique fédérales du canada, Nombre de lits d’hôpitaux pour 1000 habitants. Montreal, Canada. Institut de la statistique Quebec, Gouvernement du Canada,Gouvernement du Québec

  22. Baumann AO, Deber RB, Silverman BE, Mallette CM (1998) Who cares? Who cures? The ongoing debate in the provision of health care. J Adv Nurs 28:1040–1045

    Article  CAS  PubMed  Google Scholar 

  23. Tran V-T, Montori VM, Eton DT, Baruch D, Falissard B, Ravaud P (2012) Development and description of measurement properties of an instrument to assess treatment burden among patients with multiple chronic conditions. BMC Med 10:68

    Article  PubMed Central  PubMed  Google Scholar 

  24. Bussière M, Hopman W, Day A, Pombo AP, Neves T, Espinosa F (2005) Indicators of functional status for primary malignant brain tumour patients. Can J Neurol Sci 32:50–56

    PubMed  Google Scholar 

  25. Jalali R, Dutta D (2012) Factors influencing quality of life in adult patients with primary brain tumors. Neuro-oncol 14:8–16

    Article  Google Scholar 

  26. Soukop M, Calman K (1977) Cancer patients: where they die—an analysis. Practitioner 219:883–888

    Google Scholar 

  27. Bass DM, Pestello EP, Garland TN (1984) Experiences with home hospice care: determinants of place of death. Death Educ 8:199–222. doi:10.1080/07481188408252460

    Article  CAS  PubMed  Google Scholar 

  28. De Conno F, Caraceni A, Groff L, Brunelli C, Donati I, Tamburini M, Ventafridda V (1996) Effect of home care on the place of death of advanced cancer patients. Eur J Cancer 32:1142–1147

    Article  Google Scholar 

  29. McCusker J (1983) Where cancer patients die: an epidemiologic study. Public Health Rep 98:170–176

    CAS  PubMed Central  PubMed  Google Scholar 

  30. Hunt R, Bonett A, Roder D (1993) Trends in the terminal care of cancer patients: South Australia, 1981–1990. Aust N Z J Med 23:245–251

    Article  CAS  PubMed  Google Scholar 

  31. Axelsson B, Christensen SB (1996) Place of death correlated to sociodemographic factors. A study of 203 patients dying of cancer in a rural Swedish county in 1990. Palliat Med 10:329–335

    Article  CAS  PubMed  Google Scholar 

  32. Clifford CA, Jolley DJ, Giles GG (1991) Where people die in Victoria. Med J Aus 155(446–451):456

    Google Scholar 

  33. Costantini M, Camoirano E, Madeddu L, Bruzzi P, Verganelli E, Henriquet F (1993) Palliative home care and place of death among cancer patients: a population-based study. Palliat Med 7:323–331

    CAS  PubMed  Google Scholar 

  34. Malden LT, Sutherland C, Tattersall MH, Morgan J, Forsyth S, Levi JA, Gunz FW (1984) Dying of cancer. Factors influencing the place of death of patients. Med J Aus 141:147–150

    CAS  Google Scholar 

  35. Catalan-Fernandez J, Pons-Sureda O, Recober-Martinez A, Avella-Mestre A, Carbonero-Malberti J, Benito-Oliver E, Garau-Llinas I (1991) Dying of cancer: the place of death and family circumstances. Med Care 29:841

    Article  CAS  PubMed  Google Scholar 

  36. Nerenz DR (2001) Capacities and limitations of information systems as data sources on quality of care at the end of life. J Pain Symptom Manage 22:773–783

    Article  CAS  PubMed  Google Scholar 

  37. Allan DE, Stajduhar KI, Reid RC (2005) The uses of provincial administrative health databases for research on palliative care: insights from British Columbia. Can BMC Palliat Care 4:2. doi:10.1186/1472-684X-4-2

    Article  Google Scholar 

  38. Iezzoni LI (1997) Assessing quality using administrative data. Ann Intern Med 127:666–674

    Article  CAS  PubMed  Google Scholar 

  39. Lipsman N, Skanda A, Kimmelman J, Bernstein M (2007) The attitudes of brain cancer patients and their caregivers towards death and dying: a qualitative study. BMC palliative care 6:7

    Article  PubMed Central  PubMed  Google Scholar 

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Acknowledgment

This work was supported by the Canadian Institutes of Health Research, Dr. Bruno Gagnon is a recipient of a the “Chercheur-clinicien Boursier” award from the Fonds de recherche Québec en Santé.

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Correspondence to Abdulrahman Alturki.

Appendix

Appendix

See Tables 5, 6, 7, and 8

Table 5 ICD-9 and ICD-10 codes defining included persons with a single intracranial tumor
Table 6 Histology codes defining included persons with primary intracranial tumors
Table 7 Codes defining included persons with complication of primary intracranial tumors
Table 8 Number of subjects per care burden estimate

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Alturki, A., Gagnon, B., Petrecca, K. et al. Patterns of care at end of life for people with primary intracranial tumors: lessons learned. J Neurooncol 117, 103–115 (2014). https://doi.org/10.1007/s11060-014-1360-2

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  • DOI: https://doi.org/10.1007/s11060-014-1360-2

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