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Major changes in bereavement care have taken place during the COVID-19 pandemic, amid a flood of requests for help from the bereaved, according to new research from the University of Cambridge.
The first major study on pandemic changes in bereavement care found that the shift to remote work helped some services reach, but many practitioners feel they lack the capacity to meet the needs people.
It is estimated that for every death, nine people are grieved. The magnitude of the impact of the COVID-19 pandemic on the bereaved is now becoming evident, whether the death is due to COVID or other causes.
Those whose loved ones have died with COVID-19 have had to deal with sudden and unexpected death, deaths in intensive care units, and seeing loved ones suffering from severe symptoms, including shortness of breath and heart failure. restlessness at the end of life. Social distancing measures have resulted in restricted end-of-life visits, leaving some to die alone.
Visiting the body of the deceased and funeral procedures have been drastically reduced, with a major impact on those bereaved from all causes, not just COVID-19. All of these factors mean that the risks of complicated and prolonged grief reactions have become higher during the pandemic.
In research published today in BMJ open, researchers from Cambridge’s Department of Public Health and Primary Care report the results of an online survey sent to health and social service staff in August 2020, inviting them to describe their experiences and views on changes in bereavement care. 805 people responded, including those working in the community, nursing homes, hospitals and hospices across the UK and Ireland.
Services faced initial challenges in adapting to changing national government guidelines. Some bereavement services have been suspended due to the layoff or redeployment of staff, in particular specialist bereavement services. Support for volunteers in hospitals and hospices has been reduced and some services have seen increased waiting lists.
“We saw a 600% increase in deaths over a 3 week period. It was difficult to manage the backlog of bereavement support, ”said a palliative medicine physician.
Bereavement care belonged to a wider range of staff, some of whom had limited experience. Some people have reported that services were under-resourced before the pandemic and the pandemic will make matters worse and add new challenges due to the complex grieving reactions.
The most significant change was the shift to remote assistance methods, such as phone and video, which was reported by 90% of respondents. Adapting care to online or telephone formats was particularly difficult, with limited access to the necessary equipment and limited training of staff in their use.
The switch to remote assistance has been a double-edged sword. On the one hand, it has increased certain possibilities for support in the event of bereavement. Child and youth support services have sometimes reported that these groups are more receptive to online support, and hospice and hospital care teams have reported expanding access to their bereavement support.
However, practitioners have described remote working as “exhausting” and difficult to manage, alongside their own emotional tensions during the pandemic.
Some practitioners feared they would be overwhelmed by the demand, “We only really see those who have been bereaved in January / February so far, so there may be many more to come,” said one. community listening service coordinator.
The changes to the services would have disrupted the ability to offer emotional support: “It felt like we were dealing with them at arm’s length when we were there to hold their hands, give them a hug when needed,” a declared a doctor of palliative medicine.
Many respondents expressed serious concerns about the long-term effects on the bereaved, noting that the inability or restrictions on being with the dying patient has a profound impact on grief.
“Many deceased people have been denied the opportunity to die in their preferred place of care / preferred place of death and have died in suboptimal environments to receive their care in recent days,” said a general practitioner.
While those bereaved by COVID-19 and non-COVID have been similarly affected by the restrictions, specific challenges related to COVID-19 have been reported. Some respondents described the anger of loved ones over COVID-19 on the death certificate. A grief liaison nurse said the illness “seemed to have a ‘stigma’ to some.” This feeling of stigma was thought to exacerbate people’s feelings of having failed to protect their family member from COVID-19.
Concerns have been raised about a large “invisible cohort of people” who may not have access to support or for whom support will be limited, which will increase unmet need. “There may be a silent epidemic of grief that we haven’t detected yet,” said a palliative medicine doctor.
Principal Investigator Dr Caroline Pearce said: “Bereavement care has undergone major changes in acute and community settings, affecting bereaved people, clinicians, support workers and the health and care system. social in general.
The increased need for bereavement care has challenged practitioners as they took on new responsibilities and skills and turned to remote and electronic working. Of particular concern is the increased potential for prolonged and complicated grief reactions among bereaved people during this time. “
Talking about grief remains a public discomfort, and it is important for practitioners to encourage bereaved people to view grief as a “ valid ” reason to seek help from health and community services, as well as to those they trust in their community. Encouragingly, many respondents noted the development of new and expanded services, but it is imperative that these be sustained over the long term. The need does not go away. “
Andy Langford, Clinical Director, CRUSE Bereavement Care
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