Quality of End-of-Life Care in Acute and Community Hospitals from Relatives' Perspectives and Stakeholder Perceptions of the Potential of their Views to Inform Positive Change in Care

The study investigated the quality of end-of-life care in hospitals settings and the utility of bereaved relatives’ views for improving care. It was conducted over ten years utilizing a multi-phased mixed methods design. In Ireland, 30,000 people die each year. Two thirds die in hospital settings. Yet prior to the initiation of this study in 2007, there was little research examining bereaved relatives’ perspectives of the quality of end-of-life care in hospital settings. There was a gap in the research comparing quality between acute and community hospitals. The first phase of the study (Part A) began in 2007. It compared the quality of end-of-life care, rated retrospectively by bereaved relatives, between two acute and two community hospitals. It examined the importance of hospital type (acute versus community) in comparison to patient and family factors, in influencing bereaved relatives’ perception of two outcomes measures (a) unmet needs for specific domains of end-of-life care and (b) satisfaction with care. The study design formed a cross sectional retrospective postal survey. Of 374 relatives contacted, 142 opted to consent to receive the questionnaire. Then 118 (Acute Hospitals =50, Community Hospitals = 68) relatives returned questionnaires. The study response rate was 31.6%. The Part A survey formed part of the early work of the Hospice Friendly Hospitals (HFH) Programme. This was a nationwide initiative, implemented over three phases between 2007 and 2015, concerned with improving the quality of end-of-life care for patients and their families. As the HFH Programme progressed there was an observed shift in approaches to measuring quality of end-of-life care. In addition to research approaches, bereaved relatives’ views were now being collated using quality improvement and assurance approaches. Yet no reflective account existed of the pragmatic value of collating their views for making improvements in care, nor of the relative utility of the different paradigms outlined. Therefore in 2014, the second phase of this study (Part B) explored healthcare professionals’ and other stakeholders’ views of the potential of bereaved relatives’ feedback to inform positive change in the care of dying patients and their families, at individual, organisational and national level of the hospital system of care. In Part B of the study, 11 stakeholders were interviewed who had experience considering or collecting bereaved relatives’ views. These included End-of-Life Co-ordinators, Researchers & Academics, National Advocacy workers and National Level Health Service Managers/Regulators. Interpretive Phenomenological Analysis (IPA) was used to explore participants’ views and experiences. Findings from Part A & B of the study were integrated in order to inform the overall programmatic aim associated with the study – the improvement of end-of-life care in acute and community hospitals. Part A respondents positively rated the quality of care in the hospitals. There were few unmet patient needs overall but in comparison, a preponderance of unmet family needs for emotional support and information. Part A respondents did not distinguish between the quality of end-of-life care in acute and community hospitals, though co-ordination of care and patient needs for help with feelings of anxiety and sadness formed an exception to this. Rather than setting of care, the importance of family preparedness for the death, of patient awareness of dying and of the family being informed that their relative was likely to die soon were highlighted. Part B participants identified both positive and nuanced perceptions of the utility of the views of bereaved relatives for informing change. Societal norms (a reluctance to talk about death and dying and, to challenge the over-medicalisation of dying) were seen as barriers to improvement. These norms, inherent in research models which exclude dying patients, were seen to mitigate against positive change in the care of dying patients and their families. In particular, to mitigate against care in relation to preparedness for dying and communication around death and dying in general. Among the research recommendations were the exploration of research models that would support preparedness for dying and a societal opening of conversations about dying.