Voices that matter: end-of-life care in two acute hospitals from the perspective of bereaved relatives

Abstract

BackgroundEnd-of-life care (EoLC) is an experience that touches the lives of everyone. Dying in an acute hospital is a common occurrence in developed countries across the world. Previous studies have shown that there is wide variation in EoLC and at times is experienced as being of poor quality. Assessing and measuring the quality of care provided is a key component of all healthcare systems. This paper reports on the qualitative analysis of open-ended free text questions that were asked as part of a post-bereavement survey conducted in two adult acute hospitals in Ireland.MethodsThis was a quantitative descriptive post-bereavement postal survey, gathering data retrospectively from relatives or friends of patients who died, utilising an adapted version of the VOICES (Views of Informal Carers - Evaluation of Services) questionnaire. VOICES MaJam has 29 core questions, seven questions requesting personal demographic information and four open-ended questions gathering descriptive data about the care experience during the patient’s last admission to hospital. A total of 356 valid questionnaires were returned. Qualitative data were managed, coded and analysed with NVivo 10, using a template analysis framework approach.ResultsThree quarters (75%: n = 268) responded to at least one of the open-ended questions. Several key themes emerged, indicating areas that require particular attention in EoLC. Two themes relate to how care needs are met and how the hospital environment has a critical influence on EoLC experiences. The remaining three themes relate more to the interpersonal context including whether patients are treated with dignity and respect, the psychological, emotional and spiritual needs of patients and their family members and communication.ConclusionsAcute hospitals need to ensure that patients and their relatives receive high quality EoLC. Seeking the views of bereaved relatives should be considered by all hospitals and healthcare settings to ascertain the quality of care at end of life. This study contributes to our understanding and knowledge of what good EoLC looks like and where care can be improved, thus enabling hospitals to direct and inform quality improvement.

Family members' opinions about bereavement care after cardiac intensive care unit patients' deaths

“…Families reported that the sympathy card was a thoughtful gesture from the staff. This is similar to other findings where families found it meaningful to receive the card. Families reported that the card did not affect their grief positively or negatively, which was unsurprising because a single card cannot lift the weight of grief following such a significant loss.…”

“…Most families did not feel that a follow‐up phone call would have benefitted their bereavement, primarily because they did not have lingering questions about what happened to their loved one. Interestingly, others have found that a follow‐up phone call can guide families on how to proceed through post‐death tasks, identify bereavement needs and allow for feedback . It can also provide an avenue to answer questions about the patient's experience in the ICU .…”

Perspectives of Nunavut patients and families on their cancer and end of life care experiences

“…Novel approaches to end of life care for First Nations people in Canada provide spaces and supports for people wishing to die in their home communities, surrounded by extended family members and interacting with the natural environment through ceremony and the use of traditional foods and medicines [29]. Anderson and Woticky provide insights about how this approach can be operationalised in urban contexts to provide end of life care that honours the physical, mental, emotional and spiritual elements of First Nations personhood [30]. Our research indicates the need for greater emphasis in the area of culturally informed care for Inuit, whose remote service landscape and cultural identity are distinct.…”

Factors affecting quality of end-of-life hospital care - a qualitative analysis of free text comments from the i-CODE survey in Norway

“…Relatives who experience the death of a close family member possess unique perspectives on the patient's suffering and needs [1]. These perspectives may provide access to prerequisites for tailored and effective medical treatment [2], and also challenge the views of healthcare professionals [3]. Thus, relatives play a central role both as caregivers and as participants in research illuminating how care for the dying person can be improved.…”