Bereavement and End of Life Care during the Covid-19 pandemic

As we arrive in the winter months with the number of Covid deaths creeping up due to a slow roll-out of booster vaccines, much of the media dialogue centres around how these deaths relate to the overall statistics. But what is often overlooked is the grieving and bereavement that follows each one of these deaths. Loss experienced by family members and friends across the country.

In this episode of Covid Matters, we spoke to Dr Emily Harrop, a Marie Curie Research Fellow at Cardiff University who specialises in palliative care. She is currently working as the Co-Principal Investigator in the national ‘Bereavement During Covid-19’ study, looking into people’s experiences of bereavement and the support services they have access to during the coronavirus pandemic. We spoke to Emily to find out more about this study and the findings so far.

Literary Review and Funding

Emily’s work in relation to Covid-19 started in March 2020 as the UK entered its first national lockdown. It had become tragically apparent then that the coronavirus was causing large-scale losses globally which were likely to continue. Research was needed in order to understand more about how this would affect people. Emily and her team began by researching other mass bereavement events, like 9/11, to assess how governments had responded to them and to see if lessons could be learned on how best to support people. They identified key features which contribute towards an effective disaster support response:

• A proactive outreach to identify the bereaved and offer them support. This includes using social media and traditional media campaigns to advertise the services available.

• Support for all kinds of trauma e.g., for emergency workers on the scene or eyewitnesses.

• The creation of a central organisation dedicated to dealing with the aftermath of the disaster and conducting a coordinated response with local communities.

• Demonstrable knowledge and understanding of the disaster and how it will affect people in their grief – going beyond usual counselling expectations to fully recognise the context.

It was following this literary review that Emily and her colleague, Dr Lucy Selman from the University of Bristol, placed a grant application for a study into people’s experiences of bereavement during the pandemic. They also wanted to examine how the bereavement support sector had responded and how they were coping through the unprecedented circumstances. Emily explains, “[the Covid-19 pandemic] was a complete shock to them, not just in terms of the greater numbers of people potentially needing support, but also the fact that so many of them would have to operate remotely and no longer be giving face-to-face support.” Their application for funding was granted by the UK Research and Innovation (UKRI) via the Economic and Social Research Council (ESRC) and their study began in August 2020.

The Process and Challenges

The process of their study involves two surveys: one taken seven months after the death of a family member and a follow-up at 13 months. Surveys are conducted online using university software and were promoted on social media and through various Covid support groups. Bereavement organisations like Marie Curie, Cruse Bereavement Support and Sue Ryder also helped to share the survey, ensuring it would reach those most affected.

At the time of recording, Emily was beginning to analyse the first round of responses from the seven-month survey. She explains that a particular challenge in their method of study is that the situation is ongoing, and restrictions are changeable. She said, “it's strange, because you have to also take into account the changing context. Some people’s loved ones will have died in full lockdown, others have experienced death during a period where things had opened-up again. So, we’ve had to take that into account when looking at the results and analysis.” This will also play a part in their final recommendations which will be double-checked to ensure that they are relevant for the date of publication.

The Findings So Far

The Bereavement During Covid-19 study assessed two types of support: end-of-life care leading up to the death of a family member and bereavement support after the death.

End-of-Life Care:

Communication was a major theme reported in the experiences of bereaved family members during end-of-life care. This is because many people were unable to be with their loved ones when they died due to Covid restrictions and blanket bans on visitors entering hospitals in the first months of the pandemic. Though smartphones and tablets were eventually introduced to reconnect families, 64% of participants said they were not able to say goodbye in the way they would have wanted. This can have a lasting effect on family members as they mourn their loss: they feel guilt and regret in being unable to comfort their loved one in the final moments of their life.

Bereavement Support:

Covid restrictions also factored into the experiences of bereavement support following the death of a family member. Because social distancing measures were in place across the country, bereaved families or individuals were left feeling more isolated. They missed out on the physical contact and emotional support they needed from others as they grieved.

In addition, the survey reveals that an initial uncertainty around the coronavirus and how it spreads created greater anxiety for those whose loved ones had died from the virus. “People were more reluctant to go out and socialise after having witnessed that trauma.” They isolated themselves further from others during their bereavement as a precaution to avoid catching the virus or passing it on.

Statistical analysis of the results published so far reveal that overall experiences of death and bereavement were slightly worse for those who lost a relative to Covid. Yet Emily reminds us of the sad reality of the situation – that no one in this study ends up better off. “It's been a terrible time for everyone so I don't want to try and make out that it's been better for some groups than others. The overriding message is that it's been such a tough time for all people who've lost family members during the pandemic.”

Recommendations and Next Steps

The recommendations Emily suggests on how we can improve the end of life and bereavement experiences of families during a pandemic build upon the learnings gathered during their literary review of mass bereavement events, as well as the responses from participants in the bereavement survey. She outlines the need to:

• Improve communication in end-of-life care. This can be difficult in the context of a pandemic; however, it is necessary to establish efficient lines of communication between end-of-life patients and their family members to ensure both parties feel comforted and connected during this upsetting time.

• Ensure that support is available for the bereaved who need it most. Pandemics distance people physically from others when social distancing measures come into effect. We need to make sure that additional support is advertised, accessible and sufficiently resourced to be able to help. It’s also important that, where possible, face-to-face options are available.

• Show an increased awareness of what it’s like to lose someone in a pandemic. Many people want to feel understood in their mourning of a loved one, particularly so exceptional circumstances like a pandemic. Counsellors should familiarise themselves with this context and recognise the specific strains and stresses of that loss.

• Humanise deaths as people, not numbers. Although statistics can be useful to judge the scale of a crisis, we must remember that each number represents a human life lost.

Expanding on the last point, Emily reflects on the National Day of Reflection which took place in March 2021 to remember the losses and the trauma of the previous year. She stresses the importance of being able to look back in order to process the tragedy. “That's something that sets [the Covid-19 pandemic] apart from some of the other mass bereavement disasters. […] They were discrete events: they happened, and then the recovery phase began. With Covid, that's not really possible because it's continuing. I think The National Day of Reflection was an important event for people to be able to stop and take a minute. Whether you've lost somebody personally or not, just to think about it, as a society, the scale of the trauma and the loss.”

The ongoing Covid-19 pandemic has sparked a greater interest in bereavement and how we can better support those who are mourning a loss. While Emily’s study is helping to identify gaps in the current services available, she hopes it will also incite a greater commitment to improving how we react to crises like this in future. “We are so grateful to everyone who took the time to fill in the survey and share their experiences with us. We're working hard to try and make the most out of that data and get the key messages out there as quickly as we can.”

• Thanks again to Dr Emily Harrop for talking to us. Emily is a Marie Curie Research Fellow at Cardiff University who specialises in palliative care. She is currently working as the Co-Principal Investigator in the national ‘Bereavement During Covid-19’ study. You can find out more about the study here.

• Photo by Guilherme Bellotti on Unsplash