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Difficulties in the Communication about the Future - An Obstacle for Self-determination amongst Residents in Palliative Phase in Residential Care Facilities.

Conference paper
Authors Ramona Schenell
Anneli Ozanne
Susann Strang
Ingela Henoch
Published in Palliative Medicine : A Multiprofessional Journal
ISSN 0269-2163
Publication year 2019
Published at Institute of Health and Care Sciences
Language en
Keywords palliative care, residential care, self-determination, older people
Subject categories Nursing


Background: Residential care facilities are common places of death with a high prevalence of palliative care needs. For some residents the ability to make and execute decisions is reduced due to cognitive or physical losses. Despite that many residents do have capacity in decision making they are not always involved in planning for their own end-of-life care. Aim: To illuminate staffs’ experiences of communication in relation to the residents’ self-determination in the palliative phase. Methods: Twenty individual semi-structured interviews with registered nurses, enrolled nurses, and physicians working in residential care facilities were analyzed with qualitative content analysis. Results: Communication was described as crucial for the self-determination. Both the residents’ own abilities to communicate and the support they could receive from others when the ability was reduced were important factors. Insufficient communication within the care team with e.g. a hierarchical communication chain, fear of talking about death, and the different professions’ interpretations of the terms palliative phase, do not resuscitate (DNR), and end-of-life discussions, also affected the residents’ self-determination, resulting in lack of planning for the future. The lack of end-of-life care planning sometimes resulted in conflicts between the staff and the relatives, hospital admissions, and life prolonging treatments which was quite the opposite of what the staff believed that the residents wanted. Conclusion/discussion: Not planning for end-of life-care compromised the residents’ self-determination and left the staff and the relatives in an uneasy position, when being forced to make decisions without knowing the residents’ wishes. By implementing a palliative approach, with a focus on quality of life, early in the residents’ illness trajectories, communication about end-of-life care, both within the group of staff and between residents, relatives and staff could be facilitated.

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