Perspectives of family-centred care at the end of life during the COVID-19 pandemic: A qualitative descriptive study.

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.

Bereaved families' experiences of end-of-life decision making for general medicine patients.

BACKGROUND: Family involvement in decision making for hospitalised patients is associated with improved end-of-life care. Yet, these discussions can be challenging for physicians and families and associated with distress, confusion and conflict. There is a need to understand how best to support families involved in decisions regarding the transition from active to palliative treatment in hospital settings. AIM: To explore bereaved families' experiences of end-of-life decision making for general medicine patients. DESIGN: A qualitative exploratory study framed by social constructionism using semistructured interviews and thematic analysis. SETTING AND PARTICIPANTS: The general medicine units of one large public hospital in Melbourne, Australia. We recruited 28 bereaved family members of patients who had received end-of-life care. FINDINGS: Patients and families depended on physicians to explain clinical complexity and treatment beneficence; however, trust in medical judgement was mediated by participant's own interpretations of clinical progress. Families sought to be respected as advocates and experienced distress if physicians disregarded their perspectives and insight concerning patient preferences. Ideally, families supported patients to express their preferences to physicians. Otherwise, families contextualised treatment decisions through their knowledge of patient's values and quality of life. Families often felt burdened by or excluded from medical decision making and experienced distress and confusion regarding their rights to request or refuse treatment. CONCLUSION: Our study highlights how families contribute to decision making to ensure end-of-life care treatments reflect patient preferences. Physicians can ease families' distress around treatment withdrawal by providing a meaningful explanation of complex clinical issues, clarifying decision-making roles and acknowledge families' desire to protect and advocate for their loved one.