Advertisement

End of life care practice and symptom management outcomes of nursing home residents with dementia: secondary analyses of IQUARE trial

  • Antoine ElynEmail author
  • Sandrine Sourdet
  • Lucas Morin
  • Fati Nourhashemi
  • Nicolas Saffon
  • Philipe de Souto Barreto
  • Yves Rolland
Research Paper

Abstract

Purpose

End-of-life care is a central issue in nursing homes. Poor care outcomes have been reported, especially among residents with dementia. Our aim was two-fold: to assess whether the diagnosis of dementia was associated with specific patterns of care and symptom management for residents with dementia during the last 6 months of life, and to compare these patterns of care between residents with dementia who died within 6 months and those who survived longer.

Methods

Secondary prospective analyses of the IQUARE trial (trial registration number NCT01703689). 175 nursing homes in South West France. Residents with and without dementia at baseline (May–June 2011), stratified according to their vital status at 6-month follow-up.

Results

Of 6275 residents enrolled in IQUARE study (including 2688 with dementia), 494 (7.9%) died within 6 months. Compared to residents without dementia (n = 254), those with dementia (n = 240) were less likely to be self-sufficient (OR = 0.08, 95% CI 0.01–0.64). They were more likely to have physical restraints (OR = 1.65, 95% CI 1.08–2.51) and less likely to be prescribed benzodiazepines (OR = 0.58, 95% CI 0.38–0.88). Among residents with dementia, those who died during the first 6 months of follow-up were more likely to be identified with a formal “end-of-life” status (OR = 5.71, 95% CI 3.48–9.37) although such identification remains low with only 15% of them. They were more likely to experience pain (OR = 1.43, 95% CI 1.04–1.97) and to be physically restrained (OR = 1.46, 95% CI 1.08–1.98). However, pain relief and psychological distress management were not improved.

Conclusions

Poor quality indicators such as physical restraints are associated with end-of-life care for residents with dementia. Among symptom management outcomes, pain medication remains low even if pain complaint increased at life end.

Keywords

Palliative care Dementia Nursing homes Symptom management End-of-life Physical restraint 

Notes

Compliance with ethical standards

Conflict of interest

The authors report no conflict of interest related to this research article.

Ethical approval

The study protocol follow the principles of the 1964 Helskinki declaration and was approved by the ethic committee of the Toulouse University Hospital and the Consultative Committee for the Treatment of Research Information on Health (“Commission Nationale de l’Informatique et des Libertés”, CNIL decision no 07-438).

Informed consent

Nursing homes volunteered to participate in IQUARE trial. Individual consent to participate was sought for each of the residents participating in the study. Residents who expressed a refusal to participate were not included.

Supplementary material

41999_2019_234_MOESM1_ESM.jpg (2.5 mb)
Supplementary material 1 (JPEG 2560 kb)
41999_2019_234_MOESM2_ESM.jpg (2.1 mb)
Supplementary material 2 (JPEG 2107 kb)

References

  1. 1.
    Mitchell SL, Teno JM, Kiely DK et al (2009) The clinical course of advanced dementia. N Engl J Med 361(16):1529–1538CrossRefGoogle Scholar
  2. 2.
    Unroe KT, Meier DE (2013) Quality of hospice care for individuals with dementia. J Am Geriatr Soc 61(7):1212–1214CrossRefGoogle Scholar
  3. 3.
    van der Steen JT, Deliens L, Koopmans RTCM et al (2017) Physicians’ perceptions of suffering in people with dementia at the end of life. Palliat Support Care 15(5):587–599CrossRefGoogle Scholar
  4. 4.
    van der Steen JT, Radbruch L, Hertogh CMPM, on behalf of the European Association for Palliative Care (EAPC) et al (2014) 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 28(3):197–209CrossRefGoogle Scholar
  5. 5.
    Van Riet Paap J, Mariani E, Chattat R et al (2015) Identification of the palliative phase in people with dementia: a variety of opinions between healthcare professionals. BMC Palliat Med 14:56CrossRefGoogle Scholar
  6. 6.
    Morin L, Aubry R (2015) End-of-life care for nursing home residents with dementia. Méd Palliat 14:191–202 (French) CrossRefGoogle Scholar
  7. 7.
    Lithgow S, Jackson GA, Browne D (2012) Estimating the prevalence of dementia: cognitive screening in Glasgow nursing homes. Int J Geriatr Psychiatry 27:785–791CrossRefGoogle Scholar
  8. 8.
    Observatoire National de la fin de vie. La fin de vie en EHPAD. Rapport « Fin de vie des personnes âgées » . Paris, 2013. https://www.parlons-fin-de-vie.fr/wp-content/uploads/2018/09/Rapport-Fin-de-vie-des-personnes-âgées.pdf. Accessed on 26 05 2019 (French)
  9. 9.
    Muller M (2017) 728 000 résidents en établissements d’hébergement pour personnes âgées en 2015. Premiers résultats de l’enquête EHPA 2015. Études Résultats 1015:1–8 (French) Google Scholar
  10. 10.
    Makdessi Y, Pradines N (2016) En EHPAD, les résidents les plus dépendants souffrent davantage de pathologies aiguës. Études Résultats 989:1–4 (French) Google Scholar
  11. 11.
    Morin L, Johnell K, Aubry R (2015) Variation in the place of death among nursing home residents in France. Age Ageing 44(3):415–421CrossRefGoogle Scholar
  12. 12.
    Reyniers T, Deliens L, Pasman HR et al (2015) International variation in place of death of older people who died from dementia in 14 European and non-European Countries. J Am Med Dir Assoc 16:165–171CrossRefGoogle Scholar
  13. 13.
    De Souto Barreto P, Lapeyre-Mestre M, Vellas B et al (2013) Potential underuse of analgesics for recognized pain in nursing home residents with dementia: a cross-sectional study. Pain 154(11):2427–2431CrossRefGoogle Scholar
  14. 14.
    Sampson EL, Candy B, David S et al (2018) Living and dying with advanced dementia: a prospective cohort study of symptoms, service use and care at the end of life. Palliat Med 32(3):668–681CrossRefGoogle Scholar
  15. 15.
    De Souto Barreto P, Lapeyre-Mestre M, Mathieu C et al (2013) A multicentric individually tailored controlled trial of education and professional support to nursing home staff: research protocol and baseline data of the IQUARE study. J Nutr Health Aging 17:173–178CrossRefGoogle Scholar
  16. 16.
    Laroche ML, Charmes JP, Merle L et al (2007) Potentially inappropriate medications in the elderly: a French consensus panel list. Eur J Clin Pharmacol 63(8):725–731CrossRefGoogle Scholar
  17. 17.
    Cruz-Jentoft AJ, Boland B, Rexach L et al (2012) Drug therapy optimization at the end of life. Drugs Aging 29(6):511–521CrossRefGoogle Scholar
  18. 18.
    Hofmann H, Schorro E, Haastert B et al (2015) Use of physical restraints in nursing homes: a multicentre cross-sectional study. BMC Geriatr 15:129CrossRefGoogle Scholar
  19. 19.
    Vandervoort A, Van den Block L, Van der Steen JT et al (2013) Nursing home residents dying with dementia in Flanders, Belgium: a natiowide postmortem study on clinical characteristics and quality of dying. J Am Med Dir Assoc 14(7):485–492CrossRefGoogle Scholar
  20. 20.
    Willemse B, de Jonge J, Smit D et al (2016) Is an unhealthy work environment in nursing home care for people with dementia associated with the prescription of psychotropic drugs and physical restraints? Int Psychogeriatr 28(6):983–994CrossRefGoogle Scholar
  21. 21.
    Garriga M, Pacchiarotti I, Kasper S et al (2016) Assessment and management of agitation in psychiatry: expert consensus. World J Biol Psychiatry 17(2):86–128CrossRefGoogle Scholar
  22. 22.
    Palm R, Sorg CGG, Ströbel A, Gerritsen DL, Holle B (2018) Severe agitation in dementia: an explorative secondary data analysis on the prevalence and associated factors in nursing home residents. J Alzheimer’s Dis 66:1463–1470CrossRefGoogle Scholar
  23. 23.
    Veldwijk-Rouwenhorst AE, Smalbrugge M, Wetzels R et al (2017) Nursing home residents with dementia and very frequent agitation: a particular group. Am J Geriatr Psychiatry 25:1339–1348CrossRefGoogle Scholar
  24. 24.
    Husebo BS, Ballard C, Cohen-Mansfield J et al (2014) The response of agitated behaviour to pain management in persons with dementia. Am J Geriatr Psychiatry 22(7):708–717CrossRefGoogle Scholar
  25. 25.
    Hunt LJ, Ritchie CS, Cataldo JK, Patel K, Stephens CE, Smith AK (2018) Pain and emergency department use in the last month of life among older adults with dementia. J Pain Symptom Manag 56(6):871–877CrossRefGoogle Scholar
  26. 26.
    Bronskill SE, Campitelli MA, Laboni A et al (2018) Low-dose trazodone, benzodiazepines, and fall-related injuries in nursing homes: a matched-cohort study. J Am Geriatr Soc 66(10):1963–1971CrossRefGoogle Scholar
  27. 27.
    Boyd M, Frey R, Balmer D et al (2019) End of life care for long-term care residents with dementia, chronic illness and cancer: prospective staff survey. BMC Geriatr 19:137CrossRefGoogle Scholar
  28. 28.
    Pivodic L, Smets T, Van den Noortgate N et al (2018) Quality of dying and quality of end-of-life care of nursing home residents in six countries: an epidemiological study. Palliat Med 32(10):1584–1595CrossRefGoogle Scholar
  29. 29.
    Maas EAT, Murray SA, Engels Y et al (2013) What tools are available to identify patients with palliative care needs in primary care: a systematic literature review and survey of European practice. Br Med J Support Palliat Care 3:444–451CrossRefGoogle Scholar
  30. 30.
    White N, Kupeli N, Vickerstaff V et al (2017) How accurate is the “Surprise Question” at identifying patients at the end of life? A systematic review and meta-analysis. BMC Med 15:139CrossRefGoogle Scholar
  31. 31.
    Downar J, Goldman R, Pinto R et al (2017) The “surprise question” for predicting death in seriously ill patients: a systematic review and meta-analysis. Can Med Assoc J 189:E484–E493CrossRefGoogle Scholar
  32. 32.
  33. 33.
    Online access: http://www.spict.org.uk/. Accessed on 26th May 2019
  34. 34.
    Online access: http://www.sfap.org/system/files/pallia10.pdf. Accessed on 26th May 2019
  35. 35.
    Oosterveld-Vlug MG, Pasman HRW, ten Koppel M et al (2018) Physician visits and recognition of residents’ terminal phase in long-term care facilities: findings from the PACE cross-sectional study in 6 EU Countries. J Am Med Dir Assoc 20(6):696–702CrossRefGoogle Scholar
  36. 36.
    Onder G, Carpenter I, Finne-Soveri H et al (2012) Assessment of nursing home residents in Europe: the service and health for elderly in long term care (SHELTER) study. BMC Health Serv Res 12:5CrossRefGoogle Scholar
  37. 37.
    Rolland Y, Tavassoli N, Gillette-Guyonnet S et al (2013) Multidisciplinary team meetings in detection of Alzheimer’s disease: data from the IDEM study. J Nutr Health Ageing 17(2):137–141CrossRefGoogle Scholar
  38. 38.
    Wiggins N, Droney J, Mohammed K, Riley J, Sleeman KE (2019) Understanding the factors associated with dementia achieving their preferred place of death: a retrospective cohort study. Age Ageing 48:433–439CrossRefGoogle Scholar
  39. 39.
    Amador S, Sampson EL, Goodman C, Robinson L, Seed Research Team (2019) A systematic review and critical appraisal of quality indicators to assess optimal palliative care for older people with dementia. Palliat Med 33(4):415–429CrossRefGoogle Scholar
  40. 40.
    Hickman SE, Unroe KT, Ersek M et al (2019) Systematic advance care planning and potentially avoidable hospitalizations of nursing facility residents. J Am Geriatr Soc 67(8):1649–1655CrossRefGoogle Scholar

Copyright information

© European Geriatric Medicine Society 2019

Authors and Affiliations

  1. 1.Palliative Care Unit “Résonance”University Hospital of ToulouseToulouse Cedex 9France
  2. 2.Frailty Hospital, Gerontology and Internal MedicineUniversity Hospital of Toulouse, Cité de la santéToulouse Cedex 9France
  3. 3.INSERM, URM1027 “Aging and Alzheimer Disease: From Observation to Intervention”, Faculté de MédecineToulouseFrance
  4. 4.Aging Research CentreKarolinska Institutet and Stockholm UniversityStockholmSweden
  5. 5.Gerontology and Internal MedicineUniversity Hospital of Toulouse, Cité de la santéToulouse Cedex 9France

Personalised recommendations