Conversation with the patient about life in connection with serious illness
Early integrated palliative care improves the quality of life for the patient with life-limiting and progressive conditions, but it is difficult to use the word ‘palliative’, which can be a loaded word for both staff and patients. We want to explore patients' experiences and preferences to talk about serious illness and palliative care with health care professionals. The aim is to find appropriate forms for conversations on this topic.
Patients enrolled in specialized palliative care teams at Sahlgrenska University Hospital will be asked to participate in an interview study.
The project is expected to increase knowledge about patients' perspectives on conversations about severe illness in real and potential palliative care needs. The long-term goal is to develop a practical working model for early integrated palliative care.
This project is affiliated with GPCC.
The project aims to develop a working model for health care professionals' conversations with patients with severe/life-limiting illness. This is urgent as more and more people are living longer with serious conditions and staff report uncertainty about talking about end-of-life wishes.
The long-term goal is to develop strategies to enable the implementation of early integrated palliative care. From a national perspective, the overall aim is to develop a practical working model that can be used to support the implementation of a Person-Centred and Coherent Care pathway that has recently been consulted on (deadline 15 February 2022) and is expected to be launched by the Swedish Association of Local Authorities and Regions (SKR) in 2022. This care pathway could have particular relevance for people with progressive conditions and limited remaining lifetime. One element of the care pathway is "conversation in serious illness", which provides opportunities to apply a palliative approach earlier in the patient's disease course.
Specific aims and issues
The overall aim is to develop a practical working model that can be used to support the implementation of a person-centred and coherent care pathway in palliative care, particularly in the context of hospital and elderly care. The specific aims are to describe and interpret, from the patient's perspective, experiences and wishes about conversations with health care professionals about serious illness and palliative care, and to develop a practical working model, based on the patient's experiences and wishes, for health care professionals conducting conversations in the context of potential needs for early palliative care.
The first research question is answered by interviews with people 18 years and older using phenomenological hermeneutic analysis. The results will form the basis for the second research question (practical working model for health professionals). For this, participatory design methodology is applied.
The implementation will be carried out in established collaboration with the palliative section at Sahlgrenska University Hospital (SU), Gothenburg (responsible for specialised palliative care at home) and municipal health and social care with a focus on general palliative care at SÄBO in the city of Gothenburg. The breadth of the participants' backgrounds provides the conditions for the model to be applicable in different health and care contexts.
Ethical review is approved for the study Dnr 2022-03953-01
Joakim Öhlén, PhD, Professor, Palliative Centre, Sahlgrenska University Hospital, Gothenburg, Sweden, and Institute of Health and care Sciences, University of Gothenburg
Stina Nyblom, MD, Assistant Professor and Consultant in Palliative Medicine, Palliative Centre, Sahlgrenska University Hospital
Malin Bengtsson, MScnN, RN, Specialist nurse in palliative care, Palliative Centre, Sahlgrenska University Hospital
Ramona Schenell, PhD, Research & Development Lead, Göteborgs Stad; expertise in palliative care for old people
Daniel Enstedt, PhD, Associate Professor in Religious Studies, University of Gothenburg
Margareta Haag, Patient Representative, Chair of the National Network against cancer