Are public health measures and individualised care compatible in the face of a pandemic? A national observational study of bereaved relatives’ experiences during the COVID-19 pandemic

Abstract

Background: COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families. Aim: To explore bereaved relatives’ experiences of quality of care and family support provided during the last days of life; to identify the impact of factors associated with perceived support. Design: A national, observational, open online survey was developed and disseminated via social media, public fora and professional networks (June–September 2020). Validated instruments and purposively designed questions assessed experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses. Participants: Individuals (⩾18 years) who had experienced the death of a relative/friend (all care settings) within the United Kingdome during the COVID-19 pandemic. Results: Respondents ( n = 278, mean 53.4 years) tended to be female ( n = 216, 78%); over half were ‘son/daughter’ (174, 62.6%) to the deceased. Deceased individuals (mean 81.6 years) most frequently died in their ‘usual place of care’ ( n = 192, 69.3%). Analysis established five conceptual themes affecting individualised care: (1) public health restrictions compounding the distress of ‘not knowing’; (2) disparate views about support from doctors and nurses; (3) challenges in communication and level of preparedness for the death; (4) delivery of compassionate care; (5) emotional needs and potential impact on grief. Male respondents (OR 2.9, p = 0.03) and those able to visit (OR 2.2, p = 0.04) were independently associated with good perceptions of family support. Conclusion: Despite public health restrictions, individualised care can be enabled by proactive, informative communication; recognising dying in a timely manner and facilitating the ability to be present before death.

Place, cause and expectedness of death and relationship to the deceased are associated with poorer experiences of end-of-life care and challenges in early bereavement: Risk factors from an online survey of people bereaved during the COVID-19 pandemic

“…End-of-life care and infection control restrictions such as social distancing policies have varied since the start of the pandemic, with inconsistencies across geographical areas and care settings. Recent research has described some of the challenges of providing end-of-life-care during the pandemic 10 and qualitatively investigated bereavement experiences 11 and support needs 12 . However, there remains little evidence to inform optimal clinical practice, bereavement support and the policy response to COVID-19 as a mass bereavement event.…”

Emotional supportive care for first-degree relatives of deceased people with COVID-19: an important but neglected issue

“…Mayland et al conducted an observational, open online survey to explore bereaved relatives' experiences during the COVID-19 pandemic. 3 The survey contained questions about demographics, an abbreviated version of the internationally used 'Care Of the Dying Evaluation' questionnaire, aiming to assess the quality of care and family support for patients in the last days of life, and relevant questions about COVID-19 and its consequences. The study population were individuals (≥18 years) who had experienced the death of a family member, within the UK, during the early COVID-19 pandemic.…”

Palliative care in COVID-19

“…The lack of in-person communication led to uncertainty about levels of care and distress among family members. Communication was not always clear enough concerning the imminent death: families experienced less time to say goodbye to their loved ones and lacked emotional support for themselves [ 24 ]. Remote communication is more challenging for people with low literacy or limited digital literacy skills, and for people with visual or hearing impairment [ 26 ].…”

“…Remote communication is more challenging for people with low literacy or limited digital literacy skills, and for people with visual or hearing impairment [ 26 ]. Some family members even experienced the death of their loved ones as traumatic [ 24 ]. In-person communication usually required personal protection equipment, which also challenges interaction [ 25 ].…”

“…A guide for compassionate phone communication with loved ones was developed to facilitate daily phone updates [ 33 ▪▪ ]. Bereaved family reported how helpful these regular proactive phone calls are [ 24 ]. Moreover, they reported that despite all challenges their loved one received compassionate care and died in the right place [ 24 ].…”