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With a focus on the use of narrative approaches, this article is a commentary on decision-making support for people with profound intellectual and multiple disability (PIMD) at the end-of-life. Due to improved health care, people with PIMD are living longer lives than ever before. Therefore, they are increasingly facing decisions relating to end-of-life care and planning. Despite the increased attention that has been given to end-of-life planning, opportunities to have preferences responded to at the end-of-life are more likely afforded to people considered to have cognitive and decision-making capacity. Those supporting people with PIMD to plan for and make decisions about end-of-life care face several challenges. These challenges are rooted in difficulties with communication exchange between people with PIMD and their communication partners, leading to a widely held perception of decision-making incompetence for this population. In response to this challenge, this article draws on empirical research to discuss decision-making support within the context of palliative care and advance care planning, specifically for people with PIMD. It promotes decision-making support as an approach to assist supporters of people with PIMD to allow those people's expressions of preferences to be acknowledged and acted upon at the end-of-life. The use of narrative is presented and discussed as a tool for enabling this responsiveness, specifically within the context of end-of-life planning.

Background: Nurses are often the first responders to in‐hospital cardiac arrest in postoperative cardiac surgical patients. Poor clarity about role expectations and responsibilities can hinder nurses' performance during cardiac advanced life support (CALS) procedures. Aim: To seek expert consensus on nurses' roles and responsibilities in CALS for patients in postoperative cardiac surgical patients. Study design: A two‐round modified eDelphi survey. Delphi items were informed by guideline literature, an audit of resuscitation records and expert interviews. Panellists, drawn from a single site of a large tertiary health service in metropolitan Melbourne, included nurses, doctors and surgeons familiar with the management of cardiac arrest in post‐operative cardiac surgical patients. Results: The two rounds of the modified eDelphi generated 55 responses. A consensus of >80% agreement was reached for 24 of the 41 statements in Round 2. All items related to nurses' roles and responsibilities during nurses pre‐ and post‐arrest phases reached consensus. In contrast, only 29% (n = 4/14) of items related to peri‐arrest, and 36% of those related to nurse scope of practise in CALS arrest (n = 4/11) reached consensus. Conclusion: The study's aim was only partially achieved. Findings indicate high agreement about nurses' roles and responsibilities before and immediately after a cardiac arrest, but limited clarity about nurses' roles when implementing the CALS protocol, such as resternotomy and internal cardiac massage. There is an urgent need to address uncertainty about nurses' roles and scope of practice in CALS, which is essential to the recognition of nurses' contribution to the cardiac specialty workforce. Relevance to clinical practise: Uncertainty about nurses 'roles and responsibilities when implementing the CALS protocol may hinder their performance to their full scope of practice, leading to poor patient outcomes. [ABSTRACT FROM AUTHOR]

Aim: To explore nurses' and family members' perspectives of family care at the end of life, during restricted visitation associated with the COVID‐19 pandemic. Background: To minimise the transmission of COVID‐19, stringent infection prevention and control measures resulted in restricted hospital access for non‐essential workers and visitors, creating challenges for the provision of family‐centred care at the end of life. Design: Qualitative descriptive approach based on naturalistic inquiry. Methods: At a large public hospital in Melbourne, Australia, individual semi‐structured interviews were undertaken with 15 registered nurses who cared for patients who died during restricted visitation associated with the COVID‐19 pandemic, and 21 bereaved family members. COREQ guidelines informed analysis and reporting. Results: Five themes developed from the data: (i) impact of visitor restrictions, which describes uncertain, ambiguous and arbitrary rules, onerous and inconsistent requirements; (ii) nurse‐family communication; (iii) family‐centred care and interrupted connections; (iv) well‐being and negative emotions; and (v) suggestions for a better way, such as moving away from the black and whiteness of the rules, prioritising communication, compassion and advocacy. Conclusions: Negative consequences for communication and the patient‐family connection at the end of life were felt deeply. The evolving COVID‐19 rules that were frequently revised and applied at short notice, and the subsequent consequences for clinical practices and care were felt deeply. Relevance to Clinical Practice: Technology‐facilitated communication, innovation and increased resources must be prioritised to overcome the challenges described in this study. A family‐centred approach to care and emphasising the patient‐family connection at the end of life is fundamental to minimising trauma and distress associated with future public health emergencies. Patient or Public Contribution: Bereaved family members contributed their first‐hand experience. Members of the health service's patient experience team ensured the research was conducted in accordance with health service guidelines for patient and public contribution. [ABSTRACT FROM AUTHOR]

Author(s): Ruth Endacott [sup.1] [sup.2], Christina Jones [sup.3], Melissa J. Bloomer [sup.1], Carole Boulanger [sup.4], Maureen Ben Nun [sup.5], Katerina K. lliopoulou [sup.6], Ingrid Egerod [sup.7], Stijn Blot [sup.8] [sup.9] [...]