Dying, death and bereavement: developing a national survey of bereaved relatives.

BACKGROUND: Assessing and measuring the experience and quality of care provided is central to the improvement of care delivery of all healthcare systems. This paper reports on the development of a survey instrument to capture the experiences of care at end of life from the perspective of bereaved relatives in the Republic of Ireland. METHODS: A multi-method, multi-stakeholder, sequential approach was adopted for this study. Items for inclusion in the survey instrument bank were identified through (1) a feasibility study and scoping literature review, (2) expert panel programme board review, (3) focus groups and (4) gap analysis. The following steps were undertaken to prioritise the items for inclusion in the final survey instrument: (1) a Delphi study (2) technical expert panel review (3) cognitive interviews with bereaved relatives and an (4) expert panel programme board review. RESULTS: Following an iterative process with key stakeholders, a survey instrument was developed with sections focusing on the provision of care at home, in the last nursing home / residential care facility, hospice and hospital, as well as care experience in the last 2 days of life, the relative's experiences of care and support, the circumstances of care surrounding death and demographic information. In total, a bank of 123 questions were prioritised to be included in the National End of Life Survey instrument. CONCLUSION: The survey will provide a standardised national approach to capturing the experience of care of those who have died, from the perspective of bereaved relatives in the Republic of Ireland. This will allow health service providers, policy makers and regulators to gather important insights into the experiences of care at end of life and will help fulfil the requirement of healthcare services to ensure they are providing high-quality care.

Assisted decision-making and interprofessional collaboration in the care of older people: a qualitative study exploring perceptions of barriers and facilitators in the acute hospital setting.

In recent years, there has been a move toward a more human rights-based approach to the issue of supported and assisted decision-making (ADM) with legislative changes strengthening the formal right for older people to participate in care planning and decision-making. Ireland's Assisted Decision-Making (Capacity) Act, 2015 breaks from traditional views of capacity to consider the uniqueness of each decision in relation to topic, time and place for those with impaired or fluctuating capacity. This study set out to explore experiences of assisted decision making (ADM) in acute care hospitals in Ireland and to identify the barriers and enablers to ADM for older people and people with dementia from the perspective of different Health and Social Care Professionals (HSCPs) involved in their care. We carried out 26 semi-structured audio-recorded interviews with a convenience sample of HSCPs working in two acute hospitals and subsequently confirmed the results. HSCPs identified several barriers to, and enablers of, ADM in acute hospitals that were categorized into three key themes: Building meaningful engagement with older people and their family carers; barriers and enablers associated with interprofessional collaboration and barriers and enablers associated with the environment. Our findings suggest that despite concrete policy and legislative underpinnings to ADM, this was not always evident in practice and suggests the need for specialized education and training on ADM in practice settings.

Dying in acute hospitals: voices of bereaved relatives.

BACKGROUND: Internationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals. METHODS: Relatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate). RESULTS: The majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support. CONCLUSIONS: This research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative's priorities for EoLC in acute hospitals and can advance care providers', policy makers' and educationalists' priorities for service improvement.