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Unsolved problems and unwanted decision-making in the last year of life: A qualitative analysis of comments from bereaved caregivers

Published online by Cambridge University Press:  10 March 2022

Jannis Knop Open the ORCID record for Jannis Knop [Opens in a new window] ,
Gloria Dust ,
Alina Kasdorf ,
Nicolas Schippel ,
Christian Rietz ,
Julia Strupp  and
Raymond Voltz
Jannis Knop*
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Gloria Dust
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Alina Kasdorf
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Nicolas Schippel
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Christian Rietz
Affiliation:
Department of Educational Science, Faculty of Educational and Social Sciences, University of Education Heidelberg, Heidelberg, Germany
Julia Strupp
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
Raymond Voltz
Affiliation:
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany Clinical Trials Center (ZKS), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany Center for Health Services Research, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany Center for Integrated Oncology Aachen Bonn Cologne Dusseldorf (CIO ABCD), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
*
Author for correspondence: Jannis Knop, Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. E-mail: jannis.knop@uk-koeln.de
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Abstract

Objectives

Patients in their last year of life, as well as their relatives, often feel that existent care structures of the healthcare system do not adequately address their individual needs and challenges. This study analyzes unmet needs in terms of unsolved problems and unwanted decision-making in the health and social care of patients in their last year of life from the perspective of bereaved caregivers.

Methods

This qualitative study is based on free-text comments from informal caregivers of deceased patients collected as part of the Last-Year-of-Life-Study-Cologne (LYOL-C) using a postal survey. With qualitative content analysis, a category system with main and subcategories was developed in a multi-step process.

Results

Free-text commentaries and demographic data were collected from 240 bereaved caregivers. Particularly outside of hospice and palliative care services, study participants addressed the following unsolved problems: poor communication with medical and nursing staff, insufficient professional support for informal caregivers, inadequate psycho-social support for patients, and poor management of pain and other symptoms. Respondents often stated that their relative had to be cared for and die outside their own home, which the relative did not want.

Significance of results

Our findings suggest the necessity for greater awareness of patients’ and their relatives’ needs in the last year of life. Addressing individual needs, integrating palliative and hospice care in acute hospitals and other healthcare structures, and identifying patients in their last year of life and their caregivers could help to achieve more targeted interventions and optimization of care.

Keywords

Bereaved caregiversEnd of lifeEnd-of-life careLast year of lifeQualitative analysis
Type
Original Article
Information
Palliative & Supportive Care , Volume 21 , Issue 2 , April 2023 , pp. 261 - 269
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Copyright
© The Author(s), 2022. Published by Cambridge University Press

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Footnotes

*

J.K. and G.D. contributed equally to this paper.

References

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