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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: anna.osullivan@esh.se
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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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