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Commentary on: Mayland CR, Hughes R, Lane S, et al. 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. Palliat Med 2021:2692163211019885
Implications for practice and research
The psychological burden of COVID-19 not only threatens healthy people at risk or those with the disease, but also affects the first-degree relatives of the deceased.
The role of the healthcare system in reducing the psychological and emotional burden among the first-degree relatives of the deceased is an issue that needs further research.
Nearly 18 months after the onset of the horrific COVID-19 pandemic, the disease kills thousands of people daily around the world. The deceased from COVID-19 are distributed in different age groups, so they have different roles in family relationships such as partner, child and parent. Undoubtedly, sudden and unexpected death imposes a heavy psychological and emotional burden on the first-degree relatives of the deceased.1 According to some, providing the opportunity to establish the latest communication between patients and their families can reduce this psychological burden to some extent.2
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. Data were collected from June to September 2020. Also, respondents were invited to participate in an in-depth qualitative interview.
Thematic content analysis of in-depth interview showed that nursing staff had provided care with respect and dignity, more frequently than doctors. Also communication with healthcare teams was reliant on remote methods, which created a disconnect between families and the relevant healthcare teams. Furthermore, respondents perceived they were not provided with sufficient time to prepare psychologically for the death of their family member. Finally, respondents reported there was a lack of regard for meeting families’ needs and providing psychosocial support.
In infectious disease epidemics like COVID-19, due to the high transmission rate of the causative agent, it is necessary to impose restrictions on patient care. These restrictions include the deprivation of the patient’s relatives from visiting them at the time of hospitalisation, the reduction of end-of-life care by the patient’s relatives, and the prohibition on holding rituals such as funerals and burials for the deceased.
It is clear that each of these limitations contributes to the development of mental and emotional disorders in the patient’s first-degree relatives, which sometimes turn into long-term grief disorder. Lived experiences of family members of patients with severe COVID-19 who died in intensive care units (ICUs) in France showed that the limited access of them to the ICU and disruption in end-of-life rituals were associated with feelings of powerlessness, abandonment, unreality and disbelief.4
Problems with end-of-life care can be partially addressed by healthcare providers by strategies such as prioritising virtual connectedness and creating alternative opportunities for relatives to ‘say goodbye’.5
In a critical commentary, Jeitziner et al outlined some important recommendations for end-of-life care in the COVID-19 pandemic situations,6 the most important of them were providing patient and family-centred end-of-life care in ICU, using the skills, functions and roles of all healthcare professionals in end-of-life care, and planning follow-up visits for relatives and psychological support.
Competing interests None declared.
Provenance and peer review Commissioned; internally peer reviewed.
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