EUROPEAN JOURNAL OF ENVIRONMENT AND PUBLIC HEALTH
Research Article
Apr 29, 2020 5417 1128

Death, Dying, and End-of-Life Care in the US and the Netherlands: A Scoping Review

Shaheda Rizvi 1,
Adnan Kisa 2 * ,
Mustafa Younis 3
1 Department of Health Management and Health Economics, Faculty of Medicine, Institute of Health and Society, University of Oslo, Oslo, NORWAY2 Professor of Health Policy and Economics, School of Health Sciences, Kristiania University College, Oslo, NORWAY3 Professor of Health Policy and Economics, School of Public Health, Jackson State University, Jackson, MI, USA* Corresponding Author
European Journal of Environment and Public Health, 2020, 4(2), em0042, https://doi.org/10.29333/ejeph/8218
Full Text (PDF)

ABSTRACT

Introduction: The aim of End of Life (EOL)-care in any setting is to improve the quality of life of patients and families through medical or non-medical interventions. The study aims at identifying gaps in the literature produced on the topic and informs areas for future research in the field.
Objective: To identify articles that discuss death and dying, with the elderly > = 70, living at home, or in nursing homes, in assisted living, or community centres, in hospice or palliative care, in hospitals or emergency care.
Methods: A scoping review of studies in the U. S. and in the Netherlands. Using the inclusion and exclusion criteria, the selected studies were analysed and categorized by themes, and then summarized based on positive, negative and ambiguous views on death discussions at all four (4) levels of discussion.
Results: From a total of one hundred and fifty-nine studies, twenty-five studies passed the selection criteria. Twenty-one were for the U. S., and four were for the Netherlands. The selected studies were analysed and categorized by themes.
Conclusion: The review pointed to a dearth of material that measured the outcome of discussions on the subject of death and dying with the elderly. Future studies could consider discussions on death and dying from the perspective of patients’ anxiety and distress, instead of concerns over financial support, religious and ethnic issues, ethical and legal parameters, and extra medical training.

KEYWORDS

death dying end-of-life care the US the Netherlands

CITATION (Harvard)

Rizvi, S., Kisa, A., and Younis, M. (2020). Death, Dying, and End-of-Life Care in the US and the Netherlands: A Scoping Review. European Journal of Environment and Public Health, 4(2), em0042. https://doi.org/10.29333/ejeph/8218
APA
Rizvi, S., Kisa, A., & Younis, M. (2020). Death, Dying, and End-of-Life Care in the US and the Netherlands: A Scoping Review. European Journal of Environment and Public Health, 4(2), em0042. https://doi.org/10.29333/ejeph/8218
Vancouver
Rizvi S, Kisa A, Younis M. Death, Dying, and End-of-Life Care in the US and the Netherlands: A Scoping Review. EUROPEAN J ENV PUBLI. 2020;4(2):em0042. https://doi.org/10.29333/ejeph/8218
AMA
Rizvi S, Kisa A, Younis M. Death, Dying, and End-of-Life Care in the US and the Netherlands: A Scoping Review. EUROPEAN J ENV PUBLI. 2020;4(2), em0042. https://doi.org/10.29333/ejeph/8218
Chicago
Rizvi, Shaheda, Adnan Kisa, and Mustafa Younis. "Death, Dying, and End-of-Life Care in the US and the Netherlands: A Scoping Review". European Journal of Environment and Public Health 2020 4 no. 2 (2020): em0042. https://doi.org/10.29333/ejeph/8218
MLA
Rizvi, Shaheda et al. "Death, Dying, and End-of-Life Care in the US and the Netherlands: A Scoping Review". European Journal of Environment and Public Health, vol. 4, no. 2, 2020, em0042. https://doi.org/10.29333/ejeph/8218

REFERENCES

  1. Anderson, W. G., Williams, J. E., Bost, J. E., & Barnard, D. (2008). Exposure to Death is Associated with Positive Attitudes and Higher Knowledge About End-of-Life Care in Graduating Medical Students. Journal of Palliative Medicine, 11(9), 1227-1233. https://doi.org/10.1089/jpm.2008.0058
  2. Arksey, H., & O’Malley, L. (2005). Scoping studies: towards a methodological framework. International Journal of Social Research Methodology, 8(1), 19-32. https://doi.org/10.1080/1364557032000119616
  3. Bhavsar, N. A., Constand, S., Harker, M., & Taylor, D. H. (2017). Death of outrage over talking about dying. BMJ Supportive & Palliative Care. https://doi.org/10.1136/bmjspcare-2016-001182
  4. Black, K., & Csikai, E. L. (2015). Dying in the Age of Choice. Journal of Social Work in End-of-Life & Palliative Care, 11(1), 27-49. https://doi.org/10.1080/15524256.2015.1021072
  5. Carlet, J., Thijs, L. G., Antonelli, M., Cassell, J., Cox, P., Hill, N., ... Thompson, B. T. (2004). Challenges in end-of-life care in the ICU. Intensive Care Medicine, 30(5), 770-784. https://doi.org/10.1007/s00134-004-2241-5
  6. Chandler, J., Williams, M., Maconachie, M., Collett, T., & Dodgeon, B. (2004). Living Alone: Its Place in Household Formation and Change (Vol. 9). https://doi.org/10.5153/sro.971
  7. Davis, R. M., Genel, M., Howe, J. P., Iii, & et al. (1996). Good care of the dying patient. JAMA, 275(6), 474-478. https://doi.org/10.1001/jama.1996.03530300058041
  8. Dennis, M. K., & Washington, K. T. (2018). “Just Let Me Go”: End-of-Life Planning Among Ojibwe Elders. Gerontologist, 58(2), 300-307. https://doi.org/10.1093/geront/gnw151
  9. Eckholm, E. (2014). Aid in dying’ movement takes hold in some states. The New York Times, February 8, p. A1.
  10. Eychmüller, S. C. Z. M. C. F. S. (2016). The impact of early palliative care on the quality of care during the last days of life: what does the evidence say? Current Opinion in Supportive and Palliative Care., 10(4), 310-315. https://doi.org/10.1097/SPC.0000000000000240
  11. Field MJ, C. C. (eds.) (1997). Approaching Death: Improving Care at the End of Life. Washington (DC): National Academies Press (US).
  12. Frances, R. N.-H., Iraida, V. C., Krystana, G., Kathleen, E., Beti, T., & Shiraz, I. M. (2016). Exploring Health Care Providers’ Views About Initiating End-of-Life Care Communication. American Journal of Hospice and Palliative Medicine®, 34(4), 308-317. https://doi.org/10.1177/1049909115627773
  13. Gellie, A., Mills, A., Levinson, M., Stephenson, G., & Flynn, E. (2015). Death: a foe to be conquered? Questioning the paradigm. Age and Ageing, 44(1), 7-10. https://doi.org/10.1093/ageing/afu116
  14. Greene, B. (2013). Transformative Advance Care Planning: The Honoring Choices Minnesota Experience. Creative Nursing 19(4), 200-204. https://doi.org/10.1891/1078-4535.19.4.200
  15. Health-and-Human-Services, U. S. D. o. (2007). Why Population Aging Matters: A Global Perspective.
  16. Hubbell, S. A. (2017). Advance care planning with individuals experiencing homelessness: Literature review and recommendations for public health practice. Public Health Nursing, 34(5), 472-478. https://doi.org/10.1111/phn.12333
  17. Institute of Medicine (US) Committee on Care at the End of Life. (2014). Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: National Academies Press.
  18. Klinkenberg, M., Willems, D. L., Onwuteaka-Philipsen, B. D., Deeg, D. J. H., & van der Wal, G. (2004). Preferences in end-of-life care of older persons: after-death interviews with proxy respondents. Social Science & Medicine, 59(12), 2467-2477. https://doi.org/10.1016/j.socscimed.2004.04.006
  19. Kwak, J., Ko, E., & Kramer, B. J. (2014). Facilitating advance care planning with ethnically diverse groups of frail, low-income elders in the USA: perspectives of care managers on challenges and recommendations. Health & Social Care in the Community, 22(2), 169-177. https://doi.org/10.1111/hsc.12073
  20. Kwon, S. A., Kolomer, S., & Alper, J. (2014). The Attitudes of Social Work Students Toward End-of-Life Care Planning. Journal of Social Work in End-of-Life & Palliative Care, 10(3), 240-256. https://doi.org/10.1080/15524256.2014.938890
  21. Latour, J. M., Fulbrook, P., & Albarran, J. W. (2009). EfCCNa survey: European intensive care nurses’ attitudes and beliefs towards end-of-life care. Nursing in Critical Care, 14(3), 110-121. https://doi.org/10.1111/j.1478-5153.2008.00328.x
  22. Llewellyn, R., Jaye, C., Egan, R., Cunningham, W., Young, J., & Radue, P. (2017). Living into death: a case for an iterative, fortified and cross-sector approach to advance care planning. Anthropology & Medicine, 24(3), 350-365. https://doi.org/10.1080/13648470.2017.1285000
  23. Nedjat-Haiem Frances R., C. I. V., Gonzalez Krystyna, Quintana Alejandra, Ell Kathleen, O’Connell Mary, Thompson Beti, and Mishra Shiraz I. (2016). Implementing an Advance Care Planning Intervention in Community Settings with Older Latinos: A Feasibility Study. Journal of Palliative Medicine. September 2017, 20(9), 984-993. https://doi.org/10.1089/jpm.2016.0504
  24. Peres, J. (2016). A Time and Place: The Role of Social Workers in Improving End-of-Life Care. Journal of Social Work in End-of-Life & Palliative Care, 12(3), 185-194. https://doi.org/10.1080/15524256.2016.1200522
  25. Periyakoil, V. S., Neri, E., & Kraemer, H. (2015). No Easy Talk: A Mixed Methods Study of Doctor Reported Barriers to Conducting Effective End-of-Life Conversations with Diverse Patients. PLoS ONE, 10(4), e0122321. https://doi.org/10.1371/journal.pone.0122321
  26. Periyakoil Vyjeyanthi S., K. H., and Neri Eric. . (2016). Multi-Ethnic Attitudes Toward Physician-Assisted Death in California and Hawaii. Journal of Palliative Medicine. October 2016, 19(10), 1060-1065. https://doi.org/10.1089/jpm.2016.0160
  27. Pizzo, P. A. (2016). Thoughts about Dying in America: Enhancing the impact of one’s life journey and legacy by also planning for the end of life. Proceedings of the National Academy of Sciences of the United States of America, 113(46), 12908-12912. https://doi.org/10.1073/pnas.1614266113
  28. Prince-Paul, M., & DiFranco, E. (2017). Upstreaming and Normalizing Advance Care Planning Conversations—A Public Health Approach. Behav Sci (Basel), 7(2). https://doi.org/10.3390/bs7020018
  29. Prince-Paul, M., & DiFranco, E. (2017). Upstreaming and Normalizing Advance Care Planning Conversations—A Public Health Approach. Behavioral Sciences, 7(2), 18. https://doi.org/10.3390/bs7020018
  30. Schulz, V. M., Crombeen, A. M., Marshall, D., Shadd, J., LaDonna, K. A., & Lingard, L. (2017). Beyond Simple Planning: Existential Dimensions of Conversations with Patients at Risk of Dying from Heart Failure. Journal of Pain and Symptom Management, 54(5), 637-644. https://doi.org/10.1016/j.jpainsymman.2017.07.041
  31. Smits, C. H. M., van den Beld, H. K., Aartsen, M. J., & Schroots, J. J. F. (2014). Aging in The Netherlands: State of the Art and Science. The Gerontologist, 54(3), 335-343. https://doi.org/10.1093/geront/gnt096
  32. Temkin-Greener, H., Zheng, N. T., Xing, J., & Mukamel, D. B. (2013). Site of Death among Nursing Home Residents in the United States: Changing Patterns, 2003-2007. Journal of the American Medical Directors Association, 14(10), 741-748. https://doi.org/10.1016/j.jamda.2013.03.009
  33. Van der Heide, A., Onwuteaka-Philipsen, B. D., Rurup, M. L., Buiting, H. M., van Delden, J. J. M., Hanssen-de Wolf, J. E., . . . van der Wal, G. (2007). End-of-Life Practices in the Netherlands under the Euthanasia Act. New England Journal of Medicine, 356(19), 1957-1965. https://doi.org/10.1056/NEJMsa071143
  34. Van Scoy, L. J., Reading, J. M., Scott, A. M., Chuang, C., Levi, B. H., & Green, M. J. (2016). Exploring the Topics Discussed During a Conversation Card Game About Death and Dying: A Content Analysis. Journal of Pain and Symptom Management, 52(5), 655-662. https://doi.org/10.1016/j.jpainsymman.2016.03.021
  35. Voorhees, J. R., Rietjens, J. A. C., van der Heide, A., & Drickamer, M. A. (2014). Discussing Physician-Assisted Dying: Physicians’ Experiences in the United States and the Netherlands. The Gerontologist, 54(5), 808-817. https://doi.org/10.1093/geront/gnt087
  36. Waldrop, D. P., Clemency, B., Lindstrom, H. A., & Cordes, C. C. (2015). We Are Strangers Walking Into Their Life-Changing Event”: How Prehospital Providers Manage Emergency Calls at the End of Life. Journal of Pain and Symptom Management, 50(3), 328-334. https://doi.org/10.1016/j.jpainsymman.2015.03.001
  37. Waldrop, D. P., & Meeker, M. A. (2014). Final decisions: How hospice enrollment prompts meaningful choices about life closure. Palliative and Supportive Care, 12(3), 211-221. https://doi.org/10.1017/S1478951512001113
  38. Watts, A. (1978). The wisdom of insecurity. London: Rider.
  39. Weathers, E., O’Caoimh, R., Cornally, N., Fitzgerald, C., Kearns, T., Coffey, A., . . . Molloy, D. W. (2016). Advance care planning: A systematic review of randomised controlled trials conducted with older adults. Maturitas, 91, 101-109. https://doi.org/10.1016/j.maturitas.2016.06.016
  40. Young, K. A., Redfield, M. M., Strand, J. J., & Dunlay, S. M. (2017). End-of-Life Discussions in Patients with Heart Failure. Journal of Cardiac Failure, 23(11), 821-825. https://doi.org/10.1016/j.cardfail.2017.08.451
  41. Zhang, B., Wright, A. A., Huskamp, H. A., Nilsson, M. E., Maciejewski, M. L., Earle, C. C., . . . Prigerson, H. G. (2009). Health Care Costs in the Last Week of Life: Associations with End of Life Conversations. Archives of internal medicine, 169(5), 480-488. https://doi.org/10.1001/archinternmed.2008.587

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