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The relationship between caregivers’ perceptions of end-of-life care in long-term care and a good resident death

Published online by Cambridge University Press:  15 May 2020

Eunyoung Lee ,
Tamara Sussman Open the ORCID record for Tamara Sussman [Opens in a new window] ,
Sharon Kaasalainen ,
Pamela Durepos ,
Lynn McCleary ,
Abigail Wickson-Griffiths  and
Rennie Bimman
Eunyoung Lee
Affiliation:
School of Social Work, McGill University, Montréal, QC, Canada
Tamara Sussman*
Affiliation:
School of Social Work, McGill University, Montréal, QC, Canada
Sharon Kaasalainen
Affiliation:
School of Nursing, McMaster University, Hamilton, ON, Canada
Pamela Durepos
Affiliation:
School of Nursing, McMaster University, Hamilton, ON, Canada
Lynn McCleary
Affiliation:
Department of Nursing, Brock University, St. Catharines, ON, Canada
Abigail Wickson-Griffiths
Affiliation:
Faculty of Nursing, University of Regina, Regina, SK, Canada
Rennie Bimman
Affiliation:
School of Social Work, McGill University, Montréal, QC, Canada
*
Author for correspondence: Tamara Sussman, McGill University, School of Social Work, 3506 University St., Rm 305, Wilson Hall, Montreal, QC, CanadaH3A 2A7. E-mail: tamara.sussman@mcgill.ca
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Abstract

Objective

Quality end-of-life (EOL) care is critical for dying residents and their family/friend caregivers. While best practices to support resident comfort at EOL in long-term care (LTC) homes are emerging, research rarely explores if and how the type of care received at EOL may contribute to caregivers’ perceptions of a good death. To address this gap, this study explored how care practices at EOL contributed to caregivers’ perceptions of a good resident death.

Method

This study used a retrospective cross-sectional survey design. Seventy-eight participants whose relative or friend died in one of five LTC homes in Canada completed self-administered questionnaires on their perceptions of EOL care and perceptions of a good resident death.

Results

Overall, caregivers reported positive experiences with EOL care and perceived residents to have died a good death. However, communication regarding what to expect in the final days of life and attention to spiritual issues were often missing components of care. Further, when explored alongside direct resident care, family support, and rooming conditions, staff communication was the only aspect of EOL care significantly associated with caregivers’ perceptions of a good resident death.

Significance of results

The findings of this study suggest that the critical role staff in LTC play in supporting caregivers’ perceptions of a good resident death. By keeping caregivers informed about expectations at the very end of life, staff can enhance caregivers’ perceptions of a good resident death. Further, by addressing spiritual issues staff may improve caregivers’ perceptions that residents were at peace when they died.

Keywords

CaregiversCommunicationEnd-of-life careLong-term care homes
Type
Original Article
Information
Palliative & Supportive Care , Volume 18 , Issue 6 , December 2020 , pp. 683 - 690
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Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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References

REFERENCES

Abarshi, E, Echteld, M, Donker, G, et al. (2011) Discussing end-of-life issues in the last months of life: A nationwide study among general practitioners. Journal of Palliative Medicine 14(3), 323–330. doi:10.1089/jpm.2010.0312CrossRefGoogle ScholarPubMed
Abbott, CH, Prigerson, HG and Maciejewski, PK (2014) The influence of patients’ quality of life at the end of life on bereaved caregivers’ suicidal ideation. Journal of Pain and Symptom Management 48(3), 459–464. doi:10.1016/j.jpainsymman.2013.09.011CrossRefGoogle ScholarPubMed
Anandarajah, G and Hight, E (2001) Spirituality and medical practice: Using the HOPE questions as a practical tool for spiritual assessment. American Family Physician 63(1), 81–89. doi:10.1016/s1443-8461(01)80044-7Google ScholarPubMed
Arcand, M, Monette, J, Monette, M, et al. (2009) Educating nursing home staff about the progression of dementia and the comfort care option: Impact on family satisfaction with end-of-life care. Journal of the American Medical Directors Association 10(1), 50–55. doi:10.1016/j.jamda.2008.07.008CrossRefGoogle ScholarPubMed
Balboni, MJ, Sullivan, A, Amobi, A, et al. (2013) Why is spiritual care infrequent at the end of life? Spiritual care perceptions among patients, nurses, and physicians and the role of training. Journal of Clinical Oncology 31(4), 461–467. doi:10.1200/jco.2012.44.6443CrossRefGoogle Scholar
Berta, W, Laporte, A, Zarnett, D, et al. (2006) A pan-Canadian perspective on institutional long-term care. Health Policy 79(2-3), 174–194. doi:10.1016/j.healthpol.2005.12.006CrossRefGoogle ScholarPubMed
Berta, W, Laporte, A, Deber, R, et al. (2013) The evolving role of health care aides in the long-term care and home and community care sectors in Canada. Human Resources for Health 11(25), 1–6. doi:10.1186/1478-4491-11-25CrossRefGoogle ScholarPubMed
Boerner, K and Schulz, R (2009) Caregiving, bereavement and complicated grief. Bereavement Care 28(3), 10–13. doi:10.1080/02682620903355382CrossRefGoogle ScholarPubMed
Bolt, SR, Verbeek, L, Meijers, JMM, et al. (2019) Families’ experiences with end-of-life care in nursing homes and associations with dying peacefully with dementia. Journal of the American Medical Directors Association 20(3), 268–272. doi:10.1016/j.jamda.2018.12.001CrossRefGoogle ScholarPubMed
Broad, JB, Gott, M, Kim, H, et al. (2013) Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential aged care settings in 45 populations, using published and available statistics. International Journal of Public Health 58(2), 257–267. doi:10.1007/s00038-012-0394-5CrossRefGoogle ScholarPubMed
Burge, F, Lawson, B, Johnston, G, et al. (2014) Bereaved family member perceptions of patient-focused family-centred care during the last 30 days of life using a mortality follow-back survey: Does location matter? BMC Palliative Care 13(25), 1–14. doi:10.1186/1472-684x-13-25CrossRefGoogle ScholarPubMed
Cable-Williams, B and Wilson, D (2014) Awareness of impending death for residents of long-term care facilities. International Journal of Older People Nursing 9(2), 169–179. doi:10.1111/opn.12045CrossRefGoogle ScholarPubMed
Canadian Institute for Health Information. (2017). Quick Stats: Continuing Care Reporting System. Available at: https://www.cihi.ca/sites/default/files/document/access-palliative-care-2018-en-web.pdf (accessed January 19, 2018).Google Scholar
Chiu, Y-W, Huang, C-T, Yin, S-M, et al. (2010) Determinants of complicated grief in caregivers who cared for terminal cancer patients. Supportive Care in Cancer 18(10), 1321–1327. doi:10.1007/s00520-009-0756-6CrossRefGoogle ScholarPubMed
De Roo, ML, van der Steen, JT, Galindo Garre, F, et al. (2014) When do people with dementia die peacefully? An analysis of data collected prospectively in long-term care settings. Palliative Medicine 28(3), 210–219. doi:10.1177/0269216313509128CrossRefGoogle ScholarPubMed
De Roo, ML, Albers, G, Deliens, L, et al. (2015) Physical and psychological distress are related to dying peacefully in residents with dementia in long-term care facilities. Journal of Pain and Symptom Management 50(1), 1–8. doi:10.1016/j.jpainsymman.2015.02.024CrossRefGoogle ScholarPubMed
Dillman, DA, Smyth, JD and Christian, LM (2009) Internet, Mail and Mixed-mode Surveys: The Tailored Design Method. New York, NY: Wiley.Google Scholar
Durepos, P, Kaasalainen, S, Sussman, T, et al. (2018) Family care conferences in long-term care: Exploring content and processes in end-of-life communication. Palliative & Supportive Care 16(5), 590–601. doi:10.1017/s1478951517000773CrossRefGoogle ScholarPubMed
Edwards, A, Pang, N, Shiu, V, et al. (2010) Review: The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: A meta-study of qualitative research. Palliative Medicine 24(8), 753–770. doi:10.1177/0269216310375860CrossRefGoogle ScholarPubMed
Flemming, J, Calloway, R, Perrels, A, et al. (2017) Dying comfortably in very old age with or without dementia in different care settings — A representative “older old population study. BMC Geriatrics 17(222). doi:10.1186/s12877-017-0605-2CrossRefGoogle Scholar
Flock, P and Terrien, JM (2011) A pilot study to explore next of kin's perspectives on end-of- life care in the nursing home. Journal of the American Medical Directors Association 12(2), 135–142. doi:10.1016/j.jamda.2010.07.017CrossRefGoogle ScholarPubMed
Fosse, A, Schaufel, MA, Ruths, S, et al. (2014) End-of-life expectations and experiences among nursing home patients and their relatives—A synthesis of qualitative studies. Patient Education and Counseling 97(1), 3–9. doi:10.1016/j.pec.2014.05.025CrossRefGoogle ScholarPubMed
Gage, LA, Washington, K, Oliver, DP, et al. (2016) Family members’ experience with hospice in nursing homes. American Journal of Hospice and Palliative Medicine 33(4), 354–362. doi:10.1177/1049909114560213CrossRefGoogle ScholarPubMed
Garrido, MM and Prigerson, HG (2014) The end-of-life experience: Modifiable predictors of caregivers’ bereavement adjustment. Cancer 120(6), 918–925. doi:10.1002/cncr.28495CrossRefGoogle ScholarPubMed
Gijsberts, M-JHE, van der Steen, JT, Hertogh, CMPM, et al. (2019) Spiritual care provided by nursing home physicians: A nationwide survey. BMJ Supportive & Palliative Care. Published Online First: 04 April 2019. doi:10.1136/bmjspcare-2018-001756Google ScholarPubMed
Gill, C, Hillier, LM, Crandall, JM, et al. (2011) Nursing guidelines for end-of- life care in long-term care settings: Sustainable improvements to care. Journal of Palliative Care 27(3), 229–237. doi:10.1177/082585971102700308CrossRefGoogle Scholar
Hamilton, VL, Daaleman, TP, Williams, CS, et al. (2009) The context of religious and spiritual care at the end of life in long-term care facilities. Sociology of Religion 70(2), 179–195. doi:10.1093/socrel/srp012CrossRefGoogle ScholarPubMed
Hancock, K, Clayton, JM, Parker, SM, et al. (2007) Discrepant perceptions about end-of-life communication: A systematic review. Journal of Pain and Symptom Management 34(2), 190–200. doi:10.1016/j.jpainsymman.2006.11.009CrossRefGoogle ScholarPubMed
Hebert, RS, Schulz, R, Copeland, V, et al. (2008) What questions do family caregivers want to discuss with health care providers in order to prepare for the death of a loved one? An ethnographic study of caregivers of patients at end of life. Journal of Palliative Medicine 11(3), 476–483. doi:10.1089/jpm.2007.0165CrossRefGoogle ScholarPubMed
Jackson, J, Derderian, L, White, P, et al. (2012) Family perspectives on end-of-life care: A metasynthesis. Journal of Hospice and Palliative Nursing 14(4), 303–311. doi: 10.1097/NJH.0b013e31824ea249CrossRefGoogle Scholar
Kaasalainen, S, Brazil, K and Kelley, ML (2014a) A pilot evaluation of the Palliative Performance Scale in long term care: Tips for success. Palliative Medicine 28(6), 784. doi:10.1177/0269216314532748Google Scholar
Kaasalainen, S, Brazil, K and Kelley, ML (2014b) Building capacity in palliative care for personal support workers in long-term care through experiential learning. International Journal of Older People Nursing 9(2), 151–158. doi:10.1111/opn.12008CrossRefGoogle Scholar
Kaasalainen, S, Sussman, T, Bui, M, et al. (2017) What are the differences among occupational groups related to their palliative care-specific educational needs and intensity of interprofessional collaboration in long-term care homes? BMC Palliative Care 16(33), 1–8. doi:10.1186/s12904-017-0207-yCrossRefGoogle ScholarPubMed
Kaasalainen, S, Sussman, T, Thompson, G, et al. (2019) A stakeholder analysis of the strengthening a palliative approach in long term care (SPA-LTC) model. Canadian Journal of Nursing Leadership 32(3), 29–39. doi:10.12927/cjnl.2019.25974CrossRefGoogle ScholarPubMed
Kang, H (2013) The prevention and handling of the missing data. Korean Journal of Anesthesiology 64(5), 402–406. doi:10.4097/kjae.2013.64.5.402CrossRefGoogle ScholarPubMed
Keast, K, Leskovar, C and Brohm, R (2010) A systematic review of spirituality and dementia in LTC. Annals of Long-Term Care 18(10), 41–48.Google Scholar
Landau, L, Brazil, K, Kaasalainen, S, et al. (2013) Training and sustaining: A model for volunteer spiritual care visitors in long-term care. Journal of Religion, Spirituality & Aging 25(3), 216–237. doi:10.1080/15528030.2012.741562CrossRefGoogle Scholar
Munn, JC and Zimmerman, S (2006) A good death for residents of long-term care: Family members speak. Journal of Social Work in End-of-Life and Palliative Care 2(3), 45–59. doi:10.1300/j457v02n03_05CrossRefGoogle ScholarPubMed
Munn, JC, Dobbs, D, Meier, A, et al. (2008) The end-of-life experience in long-term care: Five themes identified from focus groups with residents, family members, and staff. The Gerontologist 48(4), 485–494. doi:10.1093/geront/48.4.485CrossRefGoogle Scholar
Nolan, S (2011) Hope beyond (redundant) hope: How chaplains work with dying patients. Palliative Medicine 25(1), 21–25. doi:10.1177/0269216310380297CrossRefGoogle ScholarPubMed
Oliver, DP, Porock, D and Zweig, S (2005) End-of-life care in U.S. nursing homes: A review of the evidence. Journal of the American Medical Directors Association 6(3 Suppl), S20–S30. doi:10.1016/j.jamda.2005.03.032CrossRefGoogle Scholar
Oliver, DP, Washington, K, Kruse, RL, et al. (2014) Hospice family members’ perceptions of and experiences with end-of-life care in the nursing home. Journal of the American Medical Directors Association 15(10), 744–750. doi:10.1016/j.jamda.2014.05.014CrossRefGoogle ScholarPubMed
Parker, D, Clifton, K, Tuckett, A, et al. (2016) Palliative care case conferences in long-term care: Views of family members. International Journal of Older People Nursing 11(2), 140–148. doi:10.1111/opn.12105CrossRefGoogle ScholarPubMed
Pillemer, K, Suitor, JJ, Henderson, CR Jr., et al. (2003) A cooperative communication intervention for nursing home staff and family members of residents. The Gerontologist 43(Suppl 2), 96–106. doi:10.1093/geront/43.suppl_2.96CrossRefGoogle ScholarPubMed
Puchalski, C and Romer, AL (2000) Taking a spiritual history allows clinicians to understand patients more fully. Journal of Palliative Medicine 3(1), 129–137. doi:10.1089/jpm.2000.3.129CrossRefGoogle ScholarPubMed
Reinhardt, JP, Boerner, K and Downes, D (2015) The positive association of end-of-life treatment discussions and care satisfaction in the nursing home. Journal of Social Work in End-of-Life and Palliative Care 11(3-4), 307–322. doi:10.1080/15524256.2015.1107805CrossRefGoogle ScholarPubMed
Saguil, A and Phelps, K (2012) The spiritual assessment. American Family Physician 86(6), 546–550.Google ScholarPubMed
Steinhauser, KE and Tulsky, AJ (2015) Defining a ‘good’ death. In Cherney, NI, Fallon, MT, Kaasa, S, Portenoy, RK and Currow, DC (eds.), Oxford Textbook of Palliative Medicine, 5th ed., Chap. 2.4. UK: Oxford University Press, pp. 77–83.Google Scholar
Sussman, T, Kaasalainen, S, Mintzberg, S, et al. (2017) Broadening end-of-life comfort to improve palliative care practices in long term care. Canadian Journal on Aging 36(3), 306–317. doi:10.1017/s0714980817000253CrossRefGoogle ScholarPubMed
Sussman, T, Kaasalainen, S, Eunyoung, L, et al. (2019) Condition specific pamphlets to improve end-of-life communication in long-term care (LTC): Staff perceptions on usability and use. Journal for Post-Acute and Long-Term Medicine (JAMDA) 20(3), 262–267.Google ScholarPubMed
Thompson, GN, McClement, SE, Menec, VH, et al. (2012) Understanding bereaved family members’ dissatisfaction with end-of-life care in nursing homes. Journal of Gerontological Nursing 38(10), 49–60. doi:10.3928/00989134-20120906-94CrossRefGoogle ScholarPubMed
Tschida, CA (2012). Spirituality in nursing homes: A social work perspective. Retrieved from Sophia, the St. Catherine University repository: https://sophia.stkate.edu/msw_papers/96.Google Scholar
Vandervoort, A, Houttekier, D, Vander Stichele, R, et al. (2014) Quality of dying in nursing home residents dying with dementia: Does advance care planning matter? A nationwide postmortem study. PLoS ONE 9(3), e91130. doi:10.1371/journal.pone.0091130CrossRefGoogle Scholar
Vohra, JU, Brazil, K, Hanna, S, et al. (2004) Family perceptions of end-of-life care in long-term care facilities. Journal of Palliative Care 20(4), 297–302. doi:10.1177/082585970402000405CrossRefGoogle ScholarPubMed
Vohra, JU, Brazil, K and Szala-Meneok, K (2006) The last word: Family members’ descriptions of end-of-life care in long-term care facilities. Journal of Palliative Care 22(1), 33–39. doi:10.1177/082585970602200106CrossRefGoogle ScholarPubMed
Volicer, L, Hurley, AC and Blasi, ZV (2001) Scales for evaluation of end-of-life care in dementia. Alzheimer Disease & Associated Disorders 15(4), 194–200. doi:10.1097/00002093-200110000-00005CrossRefGoogle ScholarPubMed
Waskiewich, S, Funk, LM and Stajduhar, KI (2012) End of life in residential care from the perspective of care aides. Canadian Journal on Aging 31(4), 411–421. doi:10.1017/s0714980812000360CrossRefGoogle ScholarPubMed
Zheng, NT and Temkin-Greener, H (2010) End-of-life care in nursing homes: The importance of CNA staff communication. Journal of the American Medical Directors Association 11(7), 494–499. doi:10.1016/j.jamda.2010.01.006CrossRefGoogle ScholarPubMed