Hostname: page-component-78c5997874-fbnjt Total loading time: 0 Render date: 2024-11-19T12:36:36.815Z Has data issue: false hasContentIssue false
  • English
  • Français

Can we determine burdensome transitions in the last year of life based on time of occurrence and frequency? An explanatory mixed-methods study

Published online by Cambridge University Press:  02 December 2021

Nicolas Schippel Open the ORCID record for Nicolas Schippel [Opens in a new window] ,
Gloria Dust ,
Christian von Reeken ,
Raymond Voltz ,
Julia Strupp  and
Christian Rietz
Nicolas Schippel*
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Koln, Germany
Gloria Dust
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Koln, Germany
Christian von Reeken
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Koln, Germany
Raymond Voltz
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Koln, Germany
Julia Strupp
Affiliation:
Department of Palliative Medicine, University Hospital of Cologne, Koln, Germany
Christian Rietz
Affiliation:
Mixed-Methods Research, University of Education Heidelberg, Heidelberg, Germany
*
Author for correspondence: Nicolas Schippel, Wetzlarer Str. 10, 51105 Köln, Germany. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

Burdensome transitions are typically defined as having a transition in the last three days or multiple hospitalizations in the last three months of life, which is seldom verified with qualitative accounts from persons concerned. This study analyses types and frequencies of transitions in the last year of life and indicators of burdensome transitions from the perspective of bereaved relatives.

Method

Cross-sectional explanatory mixed-methods study with 351 surveyed and 41 interviewed bereaved relatives in a German urban area. Frequencies, t-tests, and Spearman correlations were computed for quantitative data. Qualitative data were analyzed using content analysis with provisional and descriptive coding/subcoding.

Results

Transitions rise sharply during the last year of life. 8.2% of patients experience a transition in the last three days and 7.8% three or more hospitalizations in the last three months of life. An empathetic way of telling patients about the prospect of death is associated with fewer transitions in the last month of life (r = 0.185, p = 0.046). Professionals being aware of the preferred place of death corresponds to fewer hospitalizations in the last three months of life (1.28 vs. 0.97, p = 0.021). Qualitative data do not confirm that burden in transitions is linked to having transitions in the last three days or multiple hospitalizations in the last three months of life. Burden is associated with (1) late and non-empathetic communication about the prospect of death, (2) not coordinating care across settings, and (3) not considering patients’ preferences.

Significance of results

Time of occurrence and frequency appear to be imperfect proxies for burdensome transitions. The subjective burden seems to be associated rather with insufficient information, preparation, and management of transitions.

Keywords

End-of-life careHealth care transitionPatient preferencePatient transferPersonal communication
Type
Original Article
Information
Palliative & Supportive Care , Volume 20 , Issue 5 , October 2022 , pp. 637 - 645
Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Aaltonen, M, Forma, L, Rissanen, P, et al. (2010) Transitions in health and social service system at the end of life. European Journal of Ageing 7(2), 91–100.CrossRefGoogle ScholarPubMed
Aaltonen, M, Raitanen, J, Forma, L, et al. (2014) Burdensome transitions at the end of life among long-term care residents with dementia. Journal of the American Medical Directors Association 15(9), 643–648.CrossRefGoogle ScholarPubMed
Abarshi, E, Echteld, M, Van den Block, L, et al. (2010) Transitions between care settings at the end of life in the Netherlands: Results from a nationwide study. Palliative Medicine 24(2), 166–174.CrossRefGoogle ScholarPubMed
Abraham, S and Menec, V (2016) Transitions between care settings at the end of life among older homecare recipients: A population-based study. Gerontology and Geriatric Medicine 2, 2333721416684400.CrossRefGoogle ScholarPubMed
Addington-Hall, J and McPherson, C (2001) After-death interviews with surrogates/bereaved family members: Some issues of validity. Journal of Pain and Symptom Management 22(3), 784–790.CrossRefGoogle ScholarPubMed
American Psychological Association (APA) (2020) Publication manual of the American Psychological Association, 7th ed. Washington, DC: American Psychological Association (APA).Google Scholar
Bahler, C, Signorell, A and Reich, O (2016) Health care utilisation and transitions between health care settings in the last 6 months of life in Switzerland. PLoS One 11(9), e0160932.CrossRefGoogle ScholarPubMed
Bertelsmann Stiftung (2015). Palliative care: Available services do not (yet) meet patient needs – expansion requires clear regulatory strategy. In Spotlight Healthcare, Gütersloh.Google Scholar
Bone, AE, Gao, W, Gomes, B, et al. (2016) Factors associated with transition from community settings to hospital as place of death for adults aged 75 and older: A population-based mortality follow-back survey. Journal of the American Geriatrics Society 64(11), 2210–2217.CrossRefGoogle ScholarPubMed
Bronfenbrenner, U (1994) Ecological models of human development. Readings on the Development of Children 2(1), 37–43.Google Scholar
Burge, FI, Lawson, B, Critchley, P, et al. (2005) Transitions in care during the end of life: Changes experienced following enrolment in a comprehensive palliative care program. BMC Palliat Care 4(1), 3.CrossRefGoogle Scholar
Burt, J, Shipman, C, Richardson, A, et al. (2010) The experiences of older adults in the community dying from cancer and non-cancer causes: A national survey of bereaved relatives. Age and Ageing 39(1), 86–91.CrossRefGoogle ScholarPubMed
Chen, P-J, Ho, C-H, Liao, J-Y, et al. (2020) The association between home healthcare and burdensome transitions at the end-of-life in people with dementia: A 12-year nationwide population-based cohort study. International Journal of Environmental Research and Public Health 17(24), 9255.CrossRefGoogle ScholarPubMed
Coombs, MA, Parker, R and de Vries, K (2017) Managing risk during care transitions when approaching end of life: A qualitative study of patients’ and health care professionals’ decision making. Palliative Medicine 31(7), 617–624.CrossRefGoogle ScholarPubMed
Davis, MA, Nallamothu, BK, Banerjee, M, et al. (2016) Identification of four unique spending patterns among older adults in the last year of life challenges standard assumptions. Health Affairs 35(7), 1316–1323.CrossRefGoogle ScholarPubMed
Delgado-Guay, MO, Kim, YJ, Shin, SH, et al. (2015) Avoidable and unavoidable visits to the emergency department among patients with advanced cancer receiving outpatient palliative care. Journal of Pain and Symptom Management 49(3), 497–504.CrossRefGoogle Scholar
Donnelly, S, Prizeman, G, Coimín, DÓ, et al. (2018) Voices that matter: End-of-life care in two acute hospitals from the perspective of bereaved relatives. BMC Palliative Care 17(1), 1–13.CrossRefGoogle ScholarPubMed
Farber, SJ, Egnew, TR, Herman-Bertsch, JL, et al. (2003) Issues in end-of-life care: Patient, caregiver, and clinician perceptions. Journal of Palliative Medicine 6(1), 19–31.CrossRefGoogle ScholarPubMed
Fetters, MD, Curry, LA and Creswell, JW (2013) Achieving integration in mixed methods designs-principles and practices. Health Services Research 48(6 Pt 2), 2134–2156.CrossRefGoogle ScholarPubMed
Gidwani, R (2018) Burdensome transitions on cancer decedents treated in different health care systems at the end of life. Journal of Clinical Oncology 36(30_suppl), 7–7.CrossRefGoogle Scholar
Gott, M, Ingleton, C, Gardiner, C, et al. (2013) Transitions to palliative care for older people in acute hospitals: A mixed-methods study. Health Services and Delivery Research 1(11), 1–108.CrossRefGoogle Scholar
Gozalo, P, Teno, JM, Mitchell, SL, et al. (2011) End-of-life transitions among nursing home residents with cognitive issues. New England Journal of Medicine 365(13), 1212–1221.CrossRefGoogle ScholarPubMed
Greenle, MM, Hirschman, KB, Coburn, K, et al. (2019) End-of-life health-care utilization patterns among chronically Ill older adults. American Journal of Hospice and Palliative Medicine 36(6), 507–512.CrossRefGoogle ScholarPubMed
Hanna, N, Quach, B, Scott, M, et al. (2020) Operationalizing burdensome transitions among adults at the end of life: A scoping review. Journal of Pain and Symptom Management 61(6), 1261–1277.CrossRefGoogle ScholarPubMed
Hanratty, B, Holmes, L, Lowson, E, et al. (2012) Older adults’ experiences of transitions between care settings at the end of life in England: A qualitative interview study. Journal of Pain and Symptom Management 44(1), 74–83.CrossRefGoogle ScholarPubMed
Hanratty, B, Lowson, E, Grande, G, et al. (2014) Transitions at the end of life for older adults – patient, carer and professional perspectives: A mixed-methods study. Health Services and Delivery Research 2(17), 1–102.CrossRefGoogle Scholar
Harrison, A and Verhoef, M (2002) Understanding coordination of care from the consumer's perspective in a regional health system. Health Services Research 37(4), 1031–1054.Google Scholar
Hunt, KJ, Shlomo, N and Addington-Hall, J (2014) End-of-life care and preferences for place of death among the oldest old: Results of a population-based survey using VOICES–short form. Journal of Palliative Medicine 17(2), 176–182.CrossRefGoogle ScholarPubMed
Jones, JM, McPherson, CJ, Zimmermann, C, et al. (2011) Assessing agreement between terminally ill cancer patients’ reports of their quality of life and family caregiver and palliative care physician proxy ratings. Journal of Pain and Symptom Management 42(3), 354–365.CrossRefGoogle ScholarPubMed
Kasdorf, A, Dust, G, Vennedey, V, et al. (2021) What are the risk factors for avoidable transitions in the last year of life? A qualitative exploration of professionals’ perspectives for improving care in Germany. BMC Health Services Research 21(1), 1–10.CrossRefGoogle ScholarPubMed
Kelfve, S, Wastesson, J, Fors, S, et al. (2018) Is the level of education associated with transitions between care settings in older adults near the end of life? A nationwide, retrospective cohort study. Palliative Medicine 32(2), 366–375.CrossRefGoogle ScholarPubMed
Lage, DE, DuMontier, C, Lee, Y, et al. (2020) Potentially burdensome end-of-life transitions among nursing home residents with poor-prognosis cancer. Cancer 126(6), 1322–1329.CrossRefGoogle ScholarPubMed
Landesbetrieb Information und Technik Nordrhein-Westfalen (IT.NRW) (2020). Bevölkerung in Privathaushalten ab 15 Jahren 2019 nach höchstem allgemeinen Schulabschluss, Geschlecht und Altersgruppen. In Mikrozensus, Vol. 2021, Düsseldorf.Google Scholar
Lawson, B, Burge, FI, Critchley, P, et al. (2006) Factors associated with multiple transitions in care during the end of life following enrollment in a comprehensive palliative care program. BMC Palliative Care 5, 4.CrossRefGoogle Scholar
Makaroun, LK, Teno, JM, Freedman, VA, et al. (2018) Late transitions and bereaved family member perceptions of quality of end-of-life care. Journal of the American Geriatrics Society 66(9), 1730–1736.CrossRefGoogle ScholarPubMed
Menec, VH, Nowicki, S and Kalischuk, A (2010) Transfers to acute care hospitals at the end of life: Do rural/remote regions differ from urban regions? Rural Remote Health 10(1), 1281.Google ScholarPubMed
Miles, MB, Huberman, AM and Saldaña, J (2014) Qualitative data analysis: A methods sourcebook, 3rd ed. Thousand Oaks, CA: Sage.Google Scholar
Miller, SC, Lima, JC, Intrator, O, et al. (2016) Palliative care consultations in nursing homes and reductions in acute care use and potentially burdensome end-of-life transitions. Journal of the American Geriatrics Society 64(11), 2280–2287.CrossRefGoogle ScholarPubMed
Naylor, MD, Kurtzman, ET and Pauly, MV (2009) Transitions of elders between long-term care and hospitals. Policy, Politics, & Nursing Practice 10(3), 187–194.CrossRefGoogle ScholarPubMed
Office for National Statistics (ONS) (2016). National Survey of Bereaved People (VOICES): England, 2015.Google Scholar
Ouslander, JG and Maslow, K (2012) Geriatrics and the triple aim: Defining preventable hospitalizations in the long-term care population. Journal of the American Geriatrics Society 60(12), 2313–2318.CrossRefGoogle ScholarPubMed
Pask, S, Pinto, C, Bristowe, K, et al. (2018) A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals. Palliative Medicine 32(6), 1078–1090.CrossRefGoogle ScholarPubMed
Reyniers, T, Houttekier, D, Cohen, J, et al. (2014) What justifies a hospital admission at the end of life? A focus group study on perspectives of family physicians and nurses. Palliative Medicine 28(7), 941–948.CrossRefGoogle Scholar
Stadt Köln - Amt für Stadtentwicklung und Statistik (2018) Kölner Zahlenspiegel. Köln: Stadt Köln.Google Scholar
Stadt Köln - Amt für Stadtentwicklung und Statistik (2019) Kölner Statistische Nachrichten - 1/2019: Statistisches Jahrbuch Köln 2018. Köln: Stadt Köln.Google Scholar
Strupp, J, Hanke, G, Schippel, N, et al. (2018) Last year of life study cologne (LYOL-C): Protocol for a cross-sectional mixed methods study to examine care trajectories and transitions in the last year of life until death. BMJ Open 8(4), e021211.CrossRefGoogle ScholarPubMed
Teno, JM, Gozalo, PL, Bynum, JP, et al. (2013) Change in end-of-life care for medicare beneficiaries: Site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA 309(5), 470–477.CrossRefGoogle ScholarPubMed
Teno, JM, Gozalo, P, Trivedi, AN, et al. (2018) Site of death, place of care, and health care transitions among US medicare beneficiaries, 2000-2015. JAMA 320(3), 264–271.CrossRefGoogle ScholarPubMed
The Economist Intelligence Unit (2015). The 2015 Quality of Death Index: Ranking palliative care across the world.Google Scholar
Van Beek, K, Woitha, K, Ahmed, N, et al. (2013) Comparison of legislation, regulations and national health strategies for palliative care in seven European countries (results from the Europall research group): A descriptive study. BMC Health Services Research 13, 275.CrossRefGoogle Scholar
Van den Block, L, Deschepper, R, Drieskens, K, et al. (2007) Hospitalisations at the end of life: Using a sentinel surveillance network to study hospital use and associated patient, disease and healthcare factors. BMC Health Services Research 7, 69.CrossRefGoogle ScholarPubMed
Van den Block, L, Pivodic, L, Pardon, K, et al. (2015) Transitions between health care settings in the final three months of life in four EU countries. European Journal of Public Health 25(4), 569–575.CrossRefGoogle ScholarPubMed
Voltz, R, Dust, G, Schippel, N, et al. (2020) Improving regional care in the last year of life by setting up a pragmatic evidence-based plan–do–study–act cycle: Results from a cross-sectional survey. BMJ Open 10(11), e035988.CrossRefGoogle ScholarPubMed
Walsh, EG, Wiener, JM, Haber, S, et al. (2012) Potentially avoidable hospitalizations of dually eligible medicare and medicaid beneficiaries from nursing facility and home- and community-based services waiver programs. Journal of the American Geriatrics Society 60(5), 821–829.CrossRefGoogle ScholarPubMed
Wilson, DM, Thomas, R, Kovacs Burns, KK, et al. (2012) Canadian rural-urban differences in end-of-life care setting transitions. Global Journal of Health Science 4(5), 1–13.CrossRefGoogle ScholarPubMed
Xing, J, Mukamel, DB and Temkin-Greener, H (2013) Hospitalizations of nursing home residents in the last year of life: Nursing home characteristics and variation in potentially avoidable hospitalizations. Journal of the American Geriatrics Society 61(11), 1900–1908.CrossRefGoogle ScholarPubMed