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

Abstract

Background 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. 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. Aim The 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. Methods This 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. Results This 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. Conclusion 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. At the same time, staff should be trained in initiating and facilitating EOL discussions.

Serious illness conversations in patients with multiple myeloma and their family caregivers—A qualitative interview study

“…In accordance, a qualitative study including patients with haematological malignancy found that patients expected the HCPs to have an open mind towards end-of-life care (Bergenholtz et al, 2020). However, in contrast it, was found that the wish to talk about end-of-life among patients and caregivers differed widely, which necessitates the development of conversational tools facilitating dialogue (Bergenholtz et al, 2020). We found the preparatory material assisted different wishes between participants for preferred information regarding end of life; it was helpful and experienced as trustful by participants.…”

“…Additionally, the participants of this study described anticipating the HCPs bringing up topics of end of life. In accordance, a qualitative study including patients with haematological malignancy found that patients expected the HCPs to have an open mind towards end-of-life care (Bergenholtz et al, 2020). However, in contrast it, was found that the wish to talk about end-of-life among patients and caregivers differed widely, which necessitates the development of conversational tools facilitating dialogue (Bergenholtz et al, 2020).…”

Limitation of life-sustaining treatment and patient involvement in decision-making: a retrospective study of a Danish COVID-19 patient cohort

“…Patient involvement, including shared decision-making, has become a key topic in healthcare, and this also includes patient involvement (if possible) in decisions regarding the level of life-sustaining treatment. However, this warrants an individual approach to ensure that the level of involvement is in accordance with the patient’s wishes [ 43 , 44 ]. The results from this study present current practice and will hopefully promote further interest in patient involvement in shared decision-making about the level of life-sustaining treatment.…”

Before the 2020 Pandemic: an observational study exploring public knowledge, attitudes, plans, and preferences towards death and end of life care in Wales

“…COVID-19 has also created an unprecedented number of fast-tracked research, which highlights the need to test and share examples of best practice as soon as they become available. A follow-up survey is underway to remedy some of the sample bias [49,50] and to gauge real-time data about how COVID-19 has affected people's attitudes towards, and engagement with, EoLC planning.…”