Talking about death and dying in a hospital setting - a qualitative study of the wishes for end-of-life conversations from the perspective of patients and spouses

Heidi Bergenholtz,Malene Missel,Helle Timm

doi:10.1186/s12904-020-00675-1

Heidi Bergenholtz, Malene Missel + Show 1 more

Open Access

https://doi.org/10.1186/s12904-020-00675-1

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Abstract

BackgroundEnd-of-life (EOL) conversations are highly important for patients living with life-threatening diseases and for their relatives. Talking about the EOL is associated with reduced costs and better quality of care in the final weeks of life. However, there is therefore a need for further clarification of the actual wishes of patients and their relatives concerning EOL conversations in an acute hospital setting.AimThe purpose of this study was to explore the wishes of patients and their relatives with regard to talking about the EOL in an acute hospital setting when living with a life-threatening disease.MethodsThis study is a qualitative study using semi-structured in-depth interviews. A total of 17 respondents (11 patients and six spouses) participated. The patients were identified by the medical staff in a medical and surgical ward using SPICT™. The interview questions were focused on the respondents’ thoughts on and wishes about their future lives, as well as on their wishes regarding talking about the EOL in a hospital setting.ResultsThis study revealed that the wish to talk about the EOL differed widely between respondents. Impairment to the patients’ everyday lives received the main focus, whereas talking about EOL was secondary. Conversations on EOL were an individual matter and ranged from not wanting to think about the EOL, to being ready to plan the funeral and expecting the healthcare professionals to be very open about the EOL. The conversations thus varied between superficial communication and crossing boundaries.ConclusionThe wish to talk about the EOL in an acute hospital setting is an individual matter and great diversity exists. This individualistic stance requires the development of conversational tools that can assist both the patients and the relatives who wish to have an EOL conversation and those who do not. At the same time, staff should be trained in initiating and facilitating EOL discussions.

Highlights

End-of-life (EOL) conversations are highly important for patients living with life-threatening diseases and for their relatives
The wish to talk about the EOL in an acute hospital setting is an individual matter and great diversity exists
This individualistic stance requires the development of conversational tools that can assist both the patients and the relatives who wish to have an EOL conversation and those who do not

Summary

Introduction

End-of-life (EOL) conversations are highly important for patients living with life-threatening diseases and for their relatives. Talking about the EOL is associated with reduced costs and better quality of care in the final weeks of life. Research has shown that talking about and planning the EOL is important for how the final days in a patient’s life may play out and is associated with reduced costs as well as a higher quality of care in the final weeks of life [2,3,4]. Patients living with a life-threatening disease express readiness to talk about the EOL before the healthcare professionals (HPs) address the issue [7], and these conversations take place very close to death, in the last week of life [8]. The patients have thoughts about the EOL, the communication and documentation of their wishes are inadequate [9]

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