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The influence of care place and diagnosis on care communication at the end of life: bereaved family members’ perspective

Published online by Cambridge University Press:  30 March 2021

Anna O'Sullivan Open the ORCID record for Anna O'Sullivan [Opens in a new window] ,
Anette Alvariza Open the ORCID record for Anette Alvariza [Opens in a new window] ,
Joakim Öhlén  and
Cecilia Larsdotter ex. Håkanson
Anna O'Sullivan*
Affiliation:
Department of Healthcare Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden
Anette Alvariza
Affiliation:
Department of Healthcare Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden Capio Palliative Care, Stockholm, Sweden
Joakim Öhlén
Affiliation:
Institute of Health and Care Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden Centre for Person-Centred Care, University of Gothenburg, Gothenburg, Sweden The Palliative Centre, Sahlgrenska University Hospital Västra Götaland Region, Gothenburg, Sweden
Cecilia Larsdotter ex. Håkanson
Affiliation:
Department of Healthcare Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden Department of Nursing Science, Sophiahemmet University, Stockholm, Sweden
*
Author for correspondence: Anna O'Sullivan, Ersta Sköndal Bräcke University College, P.O. Box 11189, SE-100 61, Stockholm, Sweden. E-mail: [email protected]
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Abstract

Objective

To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members’ perspective.

Method

A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20−90 years old, 70% women) of people who died in hospital was employed to meet the study aim.

Results

Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40).

Significance of results

This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members’ reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.

Keywords

CommunicationDiagnosisEnd of lifeFamily membersPlace of care
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 6 , December 2021 , pp. 664 - 671
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Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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References

REFERENCES

Addington-Hall, JM and O'Callaghan, AC (2009) A comparison of the quality of care provided to cancer patients in the UK in the last three months of life in in-patient hospices compared with hospitals, from the perspective of bereaved relatives: Results from a survey using the VOICES questionnaire. Palliative Medicine 23(3), 190–197.CrossRefGoogle ScholarPubMed
Ahmadi, Z, Lundström, S, Janson, C, et al. (2015) End-of-life care in oxygen-dependent COPD and cancer: A national population-based study. The European Respiratory Journal 46(4), 1190–1193.CrossRefGoogle ScholarPubMed
Al-Qurainy, R, Collis, E and Feuer, D (2009) Dying in an acute hospital setting: The challenges and solutions. International Journal of Clinical Practice 63(3), 508–515.CrossRefGoogle Scholar
Bausewein, C, Daveson, BA, Currow, DC, et al. (2016) EAPC white paper on outcome measurement in palliative care: Improving practice, attaining outcomes and delivering quality services—recommendations from the European Association for Palliative Care (EAPC) task force on outcome measurement. Palliative Medicine 30(1), 6–22.CrossRefGoogle ScholarPubMed
Bollig, G, Gjengedal, E and Rosland, JH (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.CrossRefGoogle ScholarPubMed
Brännström, M, Hägglund, L, Fürst, CJ, et al. (2012) Unequal care for dying patients in Sweden: A comparative registry study of deaths from heart disease and cancer. European Journal of Cardiovascular Nursing 11(4), 454–459.CrossRefGoogle ScholarPubMed
Brighton, LJ and Bristowe, K (2016) Communication in palliative care: Talking about the end of life, before the end of life. Postgraduate Medical Journal 92(1090), 466–470.CrossRefGoogle ScholarPubMed
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 Ageing 39(1), 86–91.CrossRefGoogle ScholarPubMed
Clark, D (2007) From margins to centre: A review of the history of palliative care in cancer. Lancet Oncology 8(5), 430–438.CrossRefGoogle ScholarPubMed
Donnelly, S, Prizeman, G, Coimín, D, 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), 117.CrossRefGoogle ScholarPubMed
Emmanuelle, Bl, Charo, Rg and Danielle, G (2011) Shared decision-making in palliative care: A systematic mixed studies review using narrative synthesis. Palliative Medicine 25(3), 242–261.Google Scholar
Eriksson, H, Milberg, A, Hjelm, K, et al. (2016) End of life care for patients dying of stroke: A comparative registry study of stroke and cancer. PLoS ONE 11(2), e0147694.CrossRefGoogle ScholarPubMed
Evans, N, Pasman, HR, Donker, GA, et al. (2014) End-of-life care in general practice: A cross-sectional, retrospective survey of ‘cancer’, ‘organ failure’ and ‘old-age/dementia’ patients. Palliative Medicine 28(7), 965–975.CrossRefGoogle ScholarPubMed
Håkanson, C, Öhlen, J, Morin, L, et al. (2015) A population-level study of place of death and associated factors in Sweden. Scandinavian Journal of Public Health 43(7), 744–751.CrossRefGoogle ScholarPubMed
Hall, S, Petkova, H, Tsouros, AD, et al. (2011) Palliative Care for Older People: Better Practices. Copenhagen: World Health Organization, Regional Office for Europe.Google Scholar
Hendriks, SA, Smalbrugge, M, Deliens, L, et al. (2017) End-of-life treatment decisions in nursing home residents dying with dementia in the Netherlands. International Journal of Geriatric Psychiatry 32(12), e43–e49.CrossRefGoogle ScholarPubMed
Henoch, I, Lövgren, M, Wilde-Larsson, B, et al. (2012) Perception of quality of care: Comparison of the views of patients’ with lung cancer and their family members. Journal of Clinical Nursing 21(3–4), 585–594.CrossRefGoogle ScholarPubMed
Houttekier, D, Reyniers, T, Deliens, L, et al. (2014) Dying in hospital with dementia and pneumonia: A nationwide study using death certificate data. Gerontology 60(1), 31–37.CrossRefGoogle ScholarPubMed
Hughes, R, Saleem, T and Addington-Hall, J (2005) Towards a culturally acceptable end-of-life survey questionnaire: A Bengali translation of VOICES. International Journal of Palliative Nursing 11(3), 116–123.CrossRefGoogle ScholarPubMed
Hunt, KJ, Shlomo, N, Richardson, A, et al. (2011). Voices re-design and testing to inform a national end-of-life care survey. Final report for the department for health. UK: University of South Hampton.Google Scholar
Hunt, KJ, Richardson, A, Darlington, ASE, et al. (2019) Developing the methods and questionnaire (VOICES-SF) for a national retrospective mortality follow-back survey of palliative and end-of-life care in England. BMJ Supportive and Palliative Care. 9(1), e5-e5.CrossRefGoogle ScholarPubMed
Johnson, M, Attree, M, Jones, I, et al. (2014) Diagnosis, prognosis and awareness of dying in nursing homes: Towards the gold standard? International Journal of Older People Nursing 9(2), 95–105.CrossRefGoogle ScholarPubMed
Jung, MY and Matthews, AK (2021) A systematic review of clinical interventions facilitating end-of-life communication between patients and family caregivers. American Journal of Hospice and Palliative Medicine®. 38 (2), 180–190.CrossRefGoogle ScholarPubMed
Keeley, MP (2016) End of life communication. In Oxford Research Encyclopedia of Communication. Oxford: Oxford University Press.Google Scholar
Kennedy, G (2016) The importance of patient dignity in care at the end of life. The Ulster Medical Journal 85(1), 45–48.Google ScholarPubMed
Koskenniemi, J, Leino-Kilpi, H and Suhonen, R (2015) Manifestation of respect in the care of older patients in long-term care settings. Scandinavian Journal of Caring Sciences 29(2), 288–296.CrossRefGoogle ScholarPubMed
Lundquist, G, Rasmussen, BH and Axelsson, B (2011) Information of imminent death or not: Does it make a difference? Journal of Clinical Oncology 29(29), 3927–3931.CrossRefGoogle ScholarPubMed
Malik, S, Goldman, R, Kevork, N, et al. (2017) Engagement of primary care physicians in home palliative care. Journal of Palliative Care 32(1), 3–10.CrossRefGoogle ScholarPubMed
McPherson, CJ and Addington-Hall, JM (2003) Judging the quality of care at the end of life: Can proxies provide reliable information? Social Science & Medicine (1982) 56(1), 95–109.CrossRefGoogle Scholar
Mousing, CA, Timm, H, Lomborg, K, et al. (2018) Barriers to palliative care in people with chronic obstructive pulmonary disease in home care: A qualitative study of the perspective of professional caregivers. Journal of Clinical Nursing 27(3–4), 650–660.CrossRefGoogle ScholarPubMed
Murray, CD, McDonald, C and Atkin, H (2015) The communication experiences of patients with palliative care needs: A systematic review and meta-synthesis of qualitative findings. Palliative and Supportive Care 13(2), 369–383.CrossRefGoogle ScholarPubMed
Murtagh, FE, Bausewein, C, Verne, J, et al. (2014) How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliative Medicine 28(1), 49–58.CrossRefGoogle ScholarPubMed
National Board of Health and Welfare, N.B.H.W. (2016) Palliative care at the end of life: Summary and improvement areas (In Swedish: Palliativ vård i livets slutskede: Sammanfattning med förbättringsområden).Google Scholar
Ong, J, Brennsteiner, A, Chow, E, et al. (2016) Correlates of family satisfaction with hospice care: General inpatient hospice care versus routine home hospice care. Journal of Palliative Medicine 19(1), 97–100.CrossRefGoogle ScholarPubMed
O'Sullivan, A, Öhlen, J, Alvariza, A, et al. (2017) Adaptation and validation of the VOICES(SF) questionnaire - For evaluation of end-of-life care in Sweden. Scandinavian Journal of Caring Sciences 32(3), 1254–1260.CrossRefGoogle ScholarPubMed
O'Sullivan, A, Alvariza, A, Öhlen, J, et al. (2018) Bereaved family members’ satisfaction with care during the last three months of life for people with advanced illness. Healthcare (Basel, Switzerland) 6(4), 130–144.Google Scholar
Payne, M (2010) Inequalities, end-of-life care and social work. Progress in Palliative Care 18(4), 221–227.CrossRefGoogle Scholar
Penders, YWH, Onwuteaka-Philipsen, B, Moreels, S, et al. (2018) Differences in primary palliative care between people with organ failure and people with cancer: An international mortality follow-back study using quality indicators. Palliative Medicine 32(9), 1498–1508.CrossRefGoogle ScholarPubMed
Ross, L, Neergaard, MA, Petersen, MA, et al. (2018) Measuring the quality of end-of-life care: Development, testing, and cultural validation of the danish version of views of informal carers’ evaluation of services–short form. Palliative Medicine 32(4), 804–814.CrossRefGoogle ScholarPubMed
Roza, KA, Lee, EJ, Meier, DE, et al. (2015) A survey of bereaved family members to assess quality of care on a palliative care unit. Journal of Palliative Medicine 18(4), 358–365.CrossRefGoogle ScholarPubMed
Seltman, HJ (2018) Experimental Design and Analysis. Pittsburgh: Statistics Department, Carnegie Mellon University.Google Scholar
Smedback, J, Öhlen, J, Arestedt, K, et al. (2017) Palliative care during the final week of life of older people in nursing homes: A register-based study. Palliative and Supportive Care 15(4), 417.CrossRefGoogle ScholarPubMed
Smets, T, Pivodic, L, Piers, R, et al. (2018) The palliative care knowledge of nursing home staff: the EU FP7 PACE cross-sectional survey in 322 nursing homes in six European countries. Palliative Medicine 32(3)1254–1260.CrossRefGoogle ScholarPubMed
Snyder, S, Allen, K, Hazelett, S, et al. (2011) Primary care physician knowledge, utilization, and attitude regarding advance care planning, hospice, and palliative care: Much work remains (757). Journal of Pain & Symptom Management 41(1), 307.CrossRefGoogle Scholar
Stephen, N, Skirton, H, Woodward, V, et al. (2013) End-of-life care discussions with nonmalignant respiratory disease patients: A systematic review. Journal of Palliative Medicine 16(5), 555–565.CrossRefGoogle ScholarPubMed
Ulmanen, P (2013) Working daughters: A blind spot in Swedish eldercare policy. Social Politics: International Studies in Gender, State & Society 20(1), 65–87.CrossRefGoogle Scholar
Ulmanen, P and Szebehely, M (2015) From the state to the family or to the market? Consequences of reduced residential eldercare in Sweden. International Journal of Social Welfare 24(1), 81–92.CrossRefGoogle Scholar
van der Steen, JT, Radbruch, L, Hertogh, CM, et al. (2014) White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine 28(3), 197–209.CrossRefGoogle ScholarPubMed
van Riet Paap, J, Vernooij-Dassen, M, Brouwer, F, et al. (2014) Improving the organization of palliative care: Identification of barriers and facilitators in five European countries. Implementation Science 9, 130.CrossRefGoogle ScholarPubMed
Wallace, CL (2015) Family communication and decision making at the end of life: A literature review. Palliative and Supportive Care 13(3), 815–825.CrossRefGoogle Scholar
Witkamp, FE, van Zuylen, L, Borsboom, G, et al. (2015) Dying in the hospital: What happens and what matters, according to bereaved relatives. Journal of Pain and Symptom Management 49(2), 203–213.CrossRefGoogle ScholarPubMed
You, JJ, Dodek, P, Lamontagne, F, et al. (2014) What really matters in end-of-life discussions? Perspectives of patients in hospital with serious illness and their families. Canadian Medical Association Journal 186(18), 679–687.CrossRefGoogle ScholarPubMed
Young, AJ, Rogers, A and Addington-Hall, JM (2008) The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: A retrospective survey of surviving family and friends using the views of informal carers evaluation of services questionnaire. Health & Social Care in the Community 16(4), 419–428.CrossRefGoogle ScholarPubMed
Young, AJ, Rogers, A, Dent, L, et al. (2009) Experiences of hospital care reported by bereaved relatives of patients after a stroke: A retrospective survey using the VOICES questionnaire. Journal of Advanced Nursing 65(10), 2161–2174.CrossRefGoogle ScholarPubMed