Hostname: page-component-78c5997874-lj6df Total loading time: 0 Render date: 2024-11-19T18:36:53.447Z Has data issue: false hasContentIssue false
  • English
  • Français

Family care conferences in long-term care: Exploring content and processes in end-of-life communication

Published online by Cambridge University Press:  29 December 2017

Pamela Durepos ,
Sharon Kaasalainen ,
Tamara Sussman ,
Deborah Parker ,
Kevin Brazil ,
Susan Mintzberg  and
Alyssa Te
Pamela Durepos
Affiliation:
School of Nursing, McMaster University, Hamilton, Ontario, Canada
Sharon Kaasalainen*
Affiliation:
School of Nursing, McMaster University, Hamilton, Ontario, Canada
Tamara Sussman
Affiliation:
Faculty of Social Work, McGill University, Montreal, Quebec, Canada
Deborah Parker
Affiliation:
Faculty of Health, University of Technology–Sydney, Sydney, New South Wales, Australia
Kevin Brazil
Affiliation:
School of Nursing and Midwifery, Queen's University–Belfast, Belfast, Northern Ireland, United Kingdom
Susan Mintzberg
Affiliation:
Faculty of Social Work, McGill University, Montreal, Quebec, Canada
Alyssa Te
Affiliation:
School of Nursing, McMaster University, Hamilton, Ontario, Canada
*
Address correspondence and reprint requests to: Sharon Kaasalainen, Faculty of Health Sciences, 3N25F, McMaster University, 1280 Main Street West, Hamilton, Ontario L8N 3Z5, Canada. E-mail: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

End-of-life (EoL) communication in long-term care (LTC) homes is often inadequate and delayed, leaving residents dying with unknown preferences or goals of care. Poor communication with staff contributes to families feeling unprepared, distressed, and dissatisfied with care. Family care conferences (FCCs) aim to increase structured systematic communication around goals and plans for the end of life. As part of the Strengthening a Palliative Approach to Care (SPA–LTC) project, FCCs were implemented in four LTC sites in Ontario, Canada. The purpose of this substudy was to examine FCC content and such guiding processes as documentation and multidisciplinary staff participation.

Method:

A total of 24 FCCs were held for residents with a Palliative Performance Scale score of 40% (nearing death). Data were collected from conference forms (i.e., Family Questionnaires, Care Plan Conference Summaries), site-specific electronic chart documents, and fieldnotes. Directed content analysis of data was informed by the Canadian Hospice Palliative Care Association's Square of Care Model, which describes eight domains of care: disease management, physical, psychological, social, practical, spiritual, EoL, and loss/bereavement.

Results:

The FCCs addressed an average of 71% of the content domains, with physical and EoL care addressed most frequently and loss/bereavement addressed the least. Two goals and five interventions were documented and planned on average per FCC. Examination of the processes supporting EoL communication found: (1) advantages to using FCC forms versus electronic charts; and (2) high levels of multidisciplinary participation overall but limited participation of personal support workers (PSWs) and physicians.

Significance of Results:

Communication around the end of life in LTC can be supported through the use of FCCs. Description of content and FCC processes provides guidance to persons implementing FCCs. Recommendations for tailoring conferences to optimize communication include use of specific conference forms, increased bereavement discussion, and further engagement of PSWs and physicians.

Keywords

End of lifeConferencesFamily meetingsLong-term carePalliative care
Type
Original Article
Information
Palliative & Supportive Care , Volume 16 , Issue 5 , October 2018 , pp. 590 - 601
Copyright
Copyright © Cambridge University Press 2017 

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

Anderson, F., Downing, G.M., Hill, J., et al. (1995). Palliative Performance Scale (PPS): A new tool. Journal of Palliative Care, 12(1), 5–11.Google Scholar
Berger, J.T. (2010). What about process? Limitations in advance directives, care planning, and incapacitated decision making. The American Journal of Bioethics, 10(4), 33–34.Google Scholar
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. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3723545/.Google Scholar
Biola, H., Sloane, P.D., Williams, C.S., et al. (2007). Physician communication with family caregivers of long-term care residents at the end of life. Journal of the American Geriatrics Society, 55(6), 846–856.Google Scholar
Bollig, G., Gjengedal, E. & Rosland, J.H. (2016). They know!—Do they? A qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes. Palliative Medicine, 30(5), 456–470.Google Scholar
Brazil, K., Bédard, M., Krueger, P., et al. (2006). Barriers to providing palliative care in long-term care facilities. Canadian Family Physician, 52(4), 472–473.Google Scholar
Broad, J., 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.Google Scholar
Canadian Hospice Palliative Care Association (CHPCA) (2014). Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice. Ottawa: Canadian Hospice Palliative Care Association. Available from http://www.chpca.net/media/319547/norms-of-practice-eng-web.pdf.Google Scholar
Cherlin, E., Fried, T., Prigerson, H.G., et al. (2005). Communication between physicians and family caregivers about care at the end of life: When do discussions occur and what is said? Journal of Palliative Medicine, 8(6), 1176–1185.Google Scholar
Crabtree, B. & Miller, W., eds. (1999). Doing Qualitative Research, 2nd ed. Thousand Oaks, CA: Sage Publications.Google Scholar
Della Santina, C. & Bernstein, R. (2004). Whole-patient assessment, goal planning, and inflection points: Their role in achieving quality end-of-life care. Clinics in Geriatric Medicine, 20(4), 595–620.Google Scholar
Durepos, P., Wickson-Griffiths, A., Hazzan, A.A., et al. (2017). Assessing the palliative content in dementia care guidelines: A systematic review. Journal of Pain and Symptom Management, 43(4), 804–813.Google Scholar
Fosse, A., Schaufel, M.A., 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.Google Scholar
Fryer, S., Bellamy, G., Morgan, T., et al. (2016). “Sometimes I've gone home feeling that my voice hasn't been heard”: A focus group study exploring the views and experiences of health care assistants when caring for dying residents. BMC Palliative Care, 15, 78. Available from https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-016-0150-3.Google Scholar
Goldsmith, J., Wittenberg-Lyles, E., Rodriguez, D., et al. (2010). Interdisciplinary geriatric and palliative care team narratives: Collaboration practices and barriers. Qualitative Health Research, 20(1), 93–104.Google Scholar
Gunhardsson, I., Svensson, A. & Berterö, C. (2007). Documentation in palliative care: Nursing documentation in a palliative care unit. A pilot study. The American Journal of Hospice and Palliative Care, 25(1), 45–51.Google Scholar
Hebert, R.S., 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.Google Scholar
Hebert, R.S., Schulz, R., Copeland, V.C., et al. (2009). Preparing family caregivers for death and bereavement: Insights from caregivers of terminally ill patients. Journal of Pain and Symptom Management, 37(1), 3–12.Google Scholar
Hennings, J., Froggatt, K. & Keady, J. (2010). Approaching the end of life and dying with dementia in care homes: The accounts of family carers. Reviews in Clinical Gerontology, 20(02), 114–127.Google Scholar
Høgsnes, L., Melin-Johansson, C. & Norbergh, K.G. (2014). The existential life situations of spouses of persons with dementia before and after relocating to a nursing home. Aging & Mental Health, 18(2), 152–160.Google Scholar
Høgsnes, L., Danielson, E., Norbergh, K., et al. (2016). Healthcare professionals' documentation in nursing homes when caring for patients with dementia in end of life: A retrospective records review. Journal of Clinical Nursing, 25(11–12), 1663–1673.Google Scholar
Hsieh, H.F. & Shannon, S.E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288.Google Scholar
Hudson, P., Quinn, K., O'Hanlon, B., et al. (2008). Family meetings in palliative care: Multidisciplinary clinical practice guidelines. BMC Palliative Care, 7(1), 1. Available from https://bmcpalliatcare.biomedcentral.com/articles/10.1186/1472-684X-7-12.Google Scholar
Hudson, P.L., Girgis, A., Mitchell, G.K., et al. (2015). Benefits and resource implications of family meetings for hospitalized palliative care patients: Research protocol. BMC Palliative Care, 14(1), 1. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4676140/.Google Scholar
Johnson, S. & Bott, M.J. (2016). Communication with residents and families in nursing homes at the end of life. Journal of Hospice and Palliative Nursing, 18(2), 124–130.Google Scholar
Kaasalainen, S. (2017). Improving Palliative Care in Long-Term Care Homes Using Participatory Action Research: Final Project Report. Kingston, ON: Canadian Frailty Network.Google Scholar
Kaasalainen, S., Sussman, T., Neves, P., et al. (2016). Strengthening a Palliative Approach in Long-Term Care (SPA–LTC): A new program to improve quality of living and dying for residents and their family members. Journal of the American Medical Directors Association, 17(3), B21.Google Scholar
Kaasalainen, S., Sussman, T., Durepos, P., et al. (2017). What are staff perceptions about their current use of emergency departments for long-term care residents at the end of life? Submitted to the Journal of the American Medical Directors Association.Google Scholar
Kontos, P.C., Miller, K.L. & Mitchell, G.J. (2009). Neglecting the importance of the decision-making and care regimes of personal support workers: A critique of standardization of care planning through the RAI/MDS. The Gerontologist, 50(3), 352–362.Google Scholar
Leclerc, B.S., Blanchard, L., Cantinotti, M., et al. (2014). The effectiveness of interdisciplinary teams in end-of-life palliative care: A systematic review of comparative studies. Journal of Palliative Care, 30(1), 44–54.Google Scholar
Martin, R.S., Hayes, B., Gregorevic, K., et al. (2016). The effects of advance care planning interventions on nursing home residents: A systematic review. Journal of the American Medical Directors Association, 17(4), 284–293.Google Scholar
Meißner, A. & Schnepp, W. (2014). Staff experiences within the implementation of computer-based nursing records in residential aged care facilities: A systematic review and synthesis of qualitative research. BMC Medical Informatics and Decision Making, 14, 54. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4114165/.Google Scholar
Parker, D. & Hughes, K. (2010). Comprehensive Evidence-Based Palliative Approach in Residential Aged Care: Executive Summary. Brisbane: Australian Government, Department of Health and Ageing. Available from https://www.caresearch.com.au/Caresearch/Portals/0/Documents/WhatisPalliativeCare/Other%20National/cebparac/Cebparac_Three_page_summary.pdf.Google Scholar
Parker, D., Clifton, K.L., Tuckett, A.G., et al. (2013). Are we addressing the issues raised by families at palliative care case conferences in residential aged care? Paper presented at the 4th Annual UnitingCare Queensland Research Conference.Google Scholar
Parker, D., Clifton, K., Tuckett, A., et al. (2015). Palliative care case conferences in long-term care: Views of family members. International Journal of Older People Nursing, 11(2), 140–148.Google Scholar
Patton, M. (2015). Qualitative Research and Evaluation Methods. Thousand Oaks, CA: Sage Publications.Google Scholar
Phillips, J.L., West, P.A., Davidson, P.M., et al. (2013). Does case conferencing for people with advanced dementia living in nursing homes improve care outcomes: Evidence from an integrative review? International Journal of Nursing Studies, 50(8), 1122–1135.Google Scholar
Reinhardt, J.P., Boerner, K. & 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 & Palliative Care, 11(3–4), 307–322.Google Scholar
Residential Aged Care Palliative Approach Toolkit. (2016). Available from https://www.caresearch.com.au/Caresearch/tabid/3579/Default.aspx.Google Scholar
Romero, M.M., Ott, C.H. & Kelber, S.T. (2014). Predictors of grief in bereaved family caregivers of person's with Alzheimer's disease: A prospective study. Death Studies, 38(6), 395–403.Google Scholar
Sandelowski, M. (2000). Focus on research methods: Whatever happened to qualitative description? Research in Nursing & Health, 23(4), 334–340.Google Scholar
Schulz, R., Mendelsohn, A.B., Haley, W.E., et al. (2003). End-of-life care and the effects of bereavement on family caregivers of persons with dementia. The New England Journal of Medicine, 349(20), 1936–1942.Google Scholar
Shanley, C., Russell, C., Middleton, H., et al. (2011). Living through end-stage dementia: The experiences and expressed needs of family carers. Dementia, 10(3), 325–340.Google Scholar
Stephen, J., Rojubally, A., MacGregor, K., et al. (2013). Evaluation of CancerChatCanada: A program of online support for Canadians affected by cancer. Current Oncology, 20(1), 39–47.Google Scholar
Sussman, T., Kaasalainen, S., Mintzberg, S., et al. (2017). Broadening the purview of comfort to improve palliative care practices in LTC. Canadian Journal on Aging, 36(3). In press.Google Scholar
Tan, H.M., Wilson, A., Olver, I., et al. (2011). The experience of palliative patients and their families of a family meeting utilised as an instrument for spiritual and psychosocial care: A qualitative study. BMC Palliative Care, 10, 7. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3073937/.Google Scholar
Temkin-Greener, H., Ladwig, S., Caprio, T., et al. (2015). Developing palliative care practice guidelines and standards for nursing home-based palliative care teams: A Delphi study. Journal of the American Medical Directors Association, 16(1), 86.e1–86.e7.Google Scholar
Thompson, G., McClement, S., Menec, V.H., et al. (2012). Understanding bereaved family members' dissatisfaction with end-of-life care in nursing homes. Journal of Gerontological Nursing, 38(10), 49–60.Google Scholar
Towsley, G.L., Hirschman, K.B. & Madden, C. (2015). Conversations about the end of life: Perspectives of nursing home residents, family, and staff. Journal of Palliative Medicine, 18(5), 421–428.Google Scholar
Tulsky, J.A. (2005). Beyond advance directives: Importance of communication skills at the end of life. The Journal of the American Medical Association, 294(3), 359–365.Google Scholar
Urquhart, C., Currell, R., Grant, M.J., et al. (2009). Nursing record systems: Effects on nursing practice and healthcare outcomes. The Cochrane Database of Systematic Reviews, 1, 1–66.Google Scholar
Virag, O. (2016). Building capacity in long-term care through Champion Teams and Comfort Care Rounds. Paper presented at the 45th Annual Scientific and Educational Meeting of the Canadian Association on Gerontology, October 21, 2016, Montreal, Canada.Google Scholar
Vohra, J.U., Brazil, K. & 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.Google Scholar
Voyer, P., McCusker, J., Cole, M.G., et al. (2014). Nursing documentation in long-term care settings: New empirical evidence demands changes be made. Clinical Nursing Research, 23(4), 442–461.Google Scholar
Wahl, J. (2011). Long-Term Care Homes Act 2007: Implications for Palliative Care. Toronto: Advocacy Centre for the Elderly. Available from http://www.palliativealliance.ca/assets/files/OTN_June_28_2011/New_LTC_homes_Act_Implications_for_Palliative_Care_for_LTC_Homes.pdf.Google Scholar
World Health Organization (2014). Strengthening of palliative care as a component of integrated treatment throughout the life course. Journal of Pain & Palliative Care Pharmacotherapy, 28(2), 130–134.Google Scholar
Wright, A.A., Zhang, B., Ray, A., et al. (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. The Journal of the American Medical Association, 300(14), 1665–1673.Google Scholar
Supplementary material: File

Durepos et al supplementary material

Durepos et al supplementary material 1

Download Durepos et al supplementary material(File)
File 50.4 KB