Skip to main content
×
Home

Broadening End-of-Life Comfort to Improve Palliative Care Practices in Long Term Care

  • Tamara Sussman (a1), Sharon Kaasalainen (a2), Susan Mintzberg (a1), Shane Sinclair (a3), Laurel Young (a4), Jenny Ploeg (a2), Valérie Bourgeois-Guérin (a5), Genevieve Thompson (a6), Lorraine Venturato (a3), Marie Earl (a7), Patricia Strachan (a2), John J. You (a8), Robin Bonifas (a9) and Margaret McKee (a10)...
Abstract
ABSTRACT

This study aimed to (1) explore how palliative care in long-term care (LTC) addresses the tensions associated with caring for the living and dying within one care community, and (2) to inform how palliative care practices may be improved to better address the needs of all residents living and dying in LTC as well as those of the families and support staff. This article reports findings from 19 focus groups and 117 participants. Study findings reveal that LTC home staff, resident, and family perspectives of end-of-life comfort applied to those who were actively dying and to their families. Our findings further suggest that eliciting residents’ perceptions of end-of-life comfort, sharing information about a fellow resident’s death more personally, and ensuring that residents, families, and staff can constructively participate in providing comfort care to dying residents could extend the purview of end-of-life comfort and support expanded integration of palliative principles within LTC.

RÉSUMÉ

Cette étude qualitative canadienne rapporte les résultats de 19 groupes de discussion comprenant 117 participants, incluant des bénéficiaires, des familles et des membres du personnel. Elle avait pour objectifs : 1) d’explorer les soins palliatifs offerts en soins de longue durée (SLD) en vue de faire face aux tensions associées à la prestation de soins aux personnes qui sont encore bien vivantes et celles en fin de vie dans une même communauté de soins et 2) d’identifier des améliorations qui pourraient être apportées aux pratiques en soins palliatifs afin de mieux répondre aux besoins de tous les bénéficiaires en vie ou mourants dans les établissements de SLD, ainsi que celles des familles et du personnel qui leur apportent du soutien. Notre étude a montré que les perspectives liées au confort en fin de vie du personnel en SLD, celles des bénéficiaires et de leurs familles étaient appliquaient à ceux qui se trouvaient en fin de vie ou aux familles qui les soutenaient. Cette compréhension du confort limitait l’intégration des principes de soins palliatifs lors des derniers jours de vie des bénéficiaires. Les résultats de notre étude ont aussi suggéré que le fait de recueillir les perceptions des bénéficiaires liées au confort en fin de vie, de partager l’information à propos de la mort d’un bénéficiaire d’une manière plus personnelle, et de s’assurer que les bénéficiaires, leurs familles et le personnel aient des occasions de participer dans les soins de confort pour les bénéficiaires mourants pouvaient accroître le confort en fin de vie et soutenir une plus grande intégration des principes de soins palliatifs en SLD.

Copyright
Corresponding author
*Correspondence and requests for reprints should be sent to / La correspondance et les demandes de tirés-à-part doivent être adressées à : Tamara Sussman, MSW, Ph.D. Associate Professor School of Social Work McGill University 3506 University, Room 305 Montreal QC H3A 2A7 <tamara.sussman@mcgill.ca>
References
Hide All
National Health and Medical Research Council, Australian Palliative Residential Aged Care (APRAC) Project Team. (2006). The national palliative care program. Guidelines for a palliative approach in residential aged care. (Enhanced version). Canberra, AUS: Australian Government Department of Health and Ageing, Commonwealth of Australia.
Banerjee A. (2009). Long-term care in Canada. An overview . In Armstrong P., Boscoe M., Clow B., Grant K., Haworth-Brockman M., Jackson B., Pederson A., Seeley M., & Springer J. (Eds.), A place to call home: Long-term care in Canada (Chapter 2, pp. 2957). Halifax, NS: Fernwood.
Bern-Klug M. (2006). Calling the question of “possible dying” among nursing home residents: Triggers, barriers, and facilitators. Journal of Social Work in End-of-Life & Palliative Care, 2, 6185.
Bern-Klug M. (2009). A framework for categorizing social interactions related to end-of-life care in nursing homes. The Gerontologist, 49(4), 295507.
Berta W., Laporte A., Zarnett D., Valdmanis V., & Anderson G. (2006). A pan-Canadian perspective on institutional long-term care. Health Policy, 79(2–3), 175194.
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), 456470.
Brazil K., McAiney C., Caron-O’Brien M., Kelley M. L., O’Krafka P., & Sturdy-Smith C. (2004). Quality end-of-life care in long-term care facilities: Service providers’ perspective. Journal of Palliative Care, 20(2), 8592.
Brown Wilson C. (2011). The value of reflexivity in resolving ethical dilemmas in care homes. Journal of Advanced Nursing, 67(9), 20682077.
Cable-Williams B., & Wilson D. (2014). Awareness of impending death for residents of long-term care facilities. International Journal of Older People Nursing, 9(2), 169179.
Canadian Hospice Palliative Care Association (2002). A model to guide hospice palliative care: Based on national principles and norms of practice. Ottawa, ON: Author.
Caouette E. (2005). The image of nursing homes and its impact on the meaning of home for elders. In Rowles G. D. & Chaudhury H. (Eds.), Home and identity in later life: International perspectives (Chapter 12, pp. 251275). New York, NY: Springer.
Cartwright J. C., Miller L., & Volpin M. (2009). Hospice in assisted living: Promoting good quality care at end of life. The Gerontologist, 49(4), 508516.
Corbin J. M., & Strauss A. (2008). The basics of qualitative research: Techniques and procedures for developing grounded theory (3rd ed.). Thousand Oaks, CA: Sage.
Cutcliffe J. (2005). Adapt or adopt: Developing and transgressing the methodological boundaries of grounded theory. Journal of Advanced Nursing, 51(4), 421428.
De Roo M. L., Albers G., Deliens L., de Vet H. C. W., Francke A. L., Van Den Noortgate N., & Van den Block L. (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), 18.
Froggatt K., Hockley J., Parker D., & Brazil K. (2011). A system lifeworld perspective on dying in long term care settings for older people: Contested states in contested places. Health & Place, 17(1), 263268.
Glaser B. G., & Strauss A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago, IL: Aldine.
Glass A. P. (2016). Family caregiving and the site of care: Four narratives about end-of-life care for individuals with dementia. Journal of Social Work in End-of-Life & Palliative Care, 12(1–2), 2346.
Goodman C., Amador S., Elmore N., Machen I., & Mathie E. (2013). Preferences and priorities for ongoing and end-of-life care: A qualitative study of older people with dementia resident in care homes. International Journal of Nursing Studies, 50(12), 16391647.
Hallberg L. R. M. (2006). The “core category” of grounded theory: Making constant comparisons. International Journal of Qualitative Studies on Health and Well-Being, 1(3), 141148.
Hanson L. C., Henderson M., & Menon M. (2002). As individual as death itself: A focus group study of terminal care in nursing homes. Journal of Palliative Medicine, 5(1), 117125.
Johnson S., & Bott M. J. (2016). Communication with residents and families in nursing homes at the end of life. Journal of Hospice & Palliative Nursing, 18(2), 124130.
Kaasalainen S., Brazil K., Ploeg J., & Martin L. S. (2007). Nurses’ perceptions around providing palliative care for long-term care residents with dementia. Journal of Palliative Care, 23(3), 173180.
Kidd P. S., & Parshall M. B. (2000). Getting the focus and the group: Enhancing analytical rigor in focus group research. Qualitative Health Research, 10(3), 293308.
Kinley J., Froggatt K., & Bennett M. I. (2013). The effect of policy on end-of-life care practice within nursing care homes: A systematic review. Palliative Medicine, 27(3), 209220.
Kitzinger J. (1995). Qualitative research: Introducing focus groups. British Medical Journal, 311, 299302.
Krueger R. A., & Casey M. A. (2000). Focus groups: A practical guide for applied researchers (3rd ed.). Thousand Oaks, CA: Sage.
Leggett S., Davies S., Hiskey S., & Erskin J. A. K. (2011). The psychological effects of considering a move into residential care: An age-related study. Journal of Housing for the Elderly, 25, 3149.
Mathie E., Goodman C., Crang C., Froggatt K., Iliffe S., Manthorpe J., & Barclay S. (2011). An uncertain future: the unchanging views of care home residents about living and dying. Palliative Medicine, 26(5), 734743.
McGregor M. J., Tate R. B., Ronald L. A., McGrail K. M. (2007). Variation in site of death among nursing home residents in British Columbia, Canada. Journal of Palliative Medicine, 10, 11281136.
Menec V. H., Nowicki S., Blandford A., & Veselyuk D. (2009). Hospitalizations at the end of life among long-term care residents. Journals of Gerontology Series A. Biological Sciences and Medical Sciences, 64(3), 395402.
Morin L., Johnell K., & Aubry R. (2015). Variation in the place of death among nursing home residents in France. Age and Ageing, 44(3), 415421.
National Gold Standards Framework. (2012). Gold standards framework in care homes. Shrewsbury, ENG: The National Gold Standards Framework Centre.
Ng C. W. L., Cheong S. K., Raj A. G., Teo W. S. K., & Leong I. Y. O. (2016). End-of-life care preferences of nursing home residents: Results of a cross-sectional study. Palliative Medicine, 30(9), 843853.
Nicholson C., Meyer J., Flatley M., Holman C., & Lowton K. (2012). Living on the margin: Understanding the experience of living and dying with frailty in old age. Social Science & Medicine, 75(8), 14261432.
Ontario Long-Term Care Homes Act. (2007). Toronto, ON: Ontario Ministry of Health and Long-Term Care. Available at http://www.health.gov.on.ca/en/common/legislation/ltcha
Ontario Ministry of Health and Long-Term Care. (2007). Community care access centres client services policy manual. Toronto, ON: Queens Printer for Ontario.
Parker Oliver D., Porock D., & Oliver D. B. (2006). Managing secrets of dying backstage: The voices of nursing home staff. Omega Journal of Death and Dying, 53(3), 193207.
Patton M. Q. (2002). Qualitative research and evaluation methods. Thousand Oaks, CA: Sage.
Pélissier C., Vohito M., Fort E., Sellier B., Agard J. P., Fontana L., & Charbotel B. (2015). Risk factors for work-related stress and subjective hardship in health-care staff in nursing homes for the elderly: A cross-sectional study. Journal of Occupational Health, 57(3), 285296.
Pleschberger S. (2007). Dignity and the challenge of dying in nursing homes: The residents’ view. Age and Ageing, 36(2), 197202.
Reynolds K., Henderson M., Schulman A., & Hanson L. C. (2002). Needs of the dying in nursing homes. Journal of Palliative Medicine, 5(6), 895901.
Seymour J. E., Kumar A., & Froggatt K. (2011). Do nursing homes for older people have the support they need to provide end-of-life care? A mixed methods enquiry in England. Palliative Medicine, 25(2), 125138.
Sims-Gould J., Wiersma E., Arseneau L., Kelley M. L., Kozak J., Habjan S., & Maclean M. (2010). Care provider perspectives on end-of-life care in long-term-care homes: Implications for whole-person and palliative care. Journal of Palliative Care, 26(2), 122129.
Sinclair S. (2011). Impact of death and dying on the personal lives and practices of palliative and hospice care professionals. Canadian Medical Association Journal, 183(2), 180187.
Strauss A., & Corbin J. (1998). Basics of qualitative research: Grounded theory procedures and techniques (2nd ed.). Thousand Oaks, CA: Sage.
Summerfield C., & Babb P. (2004). Social trends. London, ENG: Office for National Statistics, The Stationery Office.
Sussman T., & Dupuis S. (2012). Supporting a relative’s move into a long-term care home: The role of starting point in shaping family members’ transition experiences. Canadian Journal on Aging/La Revue canadienne du vieillissement, 31(4), 395410.
Temkin-Greener H., Ladwig S., Caprio T., Norton S., Quill T., Olsan T., … Mukamel D. B. (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.e186.e7.
Thompson G. N., McClement S. E., Menec V. H., & Chochinov H. M. (2012). Understanding bereaved family members’ dissatisfaction with end-of-life care in nursing homes. Journal of Gerontological Nursing, 38(10), 4960.
van Soest-Poortvliet M. C., van der Steen J. T., de Vet H. C., Hertogh C. M., Deliens L., & Onwuteaka-Philipsen B. D. (2015). Comfort goal of care and end-of-life outcomes in dementia: A prospective study. Palliative Medicine, 29(6), 538546.
Waldrop D. P., & Kirkendall A. M. (2009). Comfort measures: A qualitative study of nursing home-based end-of-life care. Journal of Palliative Medicine, 12(8), 719725.
Waldrop D. P., & Kusmaul N. (2011). The living–dying interval in nursing home-based end-of-life care: Family caregivers’ experiences. Journal of Gerontological Social Work, 54(8), 768787.
Wahl J. (2011). Long term care homes act 2007: Implications for palliative care. Toronto, ON: Advocacy Centre for the Elderly.
World Health Organization. (2010). Ageing and life course: Our ageing world. Geneva, CHE: Author.
World Health Organization. (2011). Palliative care for older people: Better practices. Copenhagen, DNK: Regional Health Office for Europe.
Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

Canadian Journal on Aging / La Revue canadienne du vieillissement
  • ISSN: 0714-9808
  • EISSN: 1710-1107
  • URL: /core/journals/canadian-journal-on-aging-la-revue-canadienne-du-vieillissement
Please enter your name
Please enter a valid email address
Who would you like to send this to? *
×

Keywords:

Metrics

Altmetric attention score

Full text views

Total number of HTML views: 11
Total number of PDF views: 94 *
Loading metrics...

Abstract views

Total abstract views: 544 *
Loading metrics...

* Views captured on Cambridge Core between 27th July 2017 - 23rd November 2017. This data will be updated every 24 hours.